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!

@Singleandproud Thank you so much - that would be incredibly helpful! We have sent the school the diagnosis report and asked for a meeting, but as it is the holidays we have heard nothing back. I am hoping we can find a way to make it all work, as there is so much we love about the school, but I worry that a massive campus with well over a thousand kids, very academically demanding and high paced, very busy and noisy etc, is just going to be too overwhelming no matter what we do. The other issue is that he, of course, has massive anxiety about going back because last year was so hard and it is hard for him to process that we might be able to make it easier now we know what is going on. He currently just goes to the nurses office whenever he is feeling too stressed, and calls me every lunchtime for a couple of minutes which seems to help him regulate. Towards the end of the year, when we began to suspect ASD and sensory issues, he started wearing ear defenders which seemed to help a bit. He also hides out with either the nurse of the receptionist every lunchtime and break as he finds the playground and all his peers way too stressful and even the library too overwhelming as it is so full of kids...He has the classic profile of being happy talking to adults, but finds other 12 year olds confusing and scary. Luckily he does not struggle with the work itself, it is more the whole environment and being away from us and the safe, calm routine of home.

Your little boy sounds lovely and I agree with the advice above of just keeping an eye on him at the moment to see how he gets on (and save up for a private diagnosis!)

My son was always a little quirky but I was adamant he couldn't be autistic as he was so creative, cuddly, good eye contact etc. He is now 12 and is still all of those things but started to struggle more from Year 3 onwards as the demands at school got higher. He's still never had what many would think of as a meltdown - he just cries, bless him. But he's now so obviously autistic - things just changed and emerged over the years. He's got a bloody great sense of humour though and loves sarcasm so that was another thing I didn't 'get' earlier when I didn't understand autism as well. He's flying at mainstream secondary as we got the support in place he needed.

I can understand things are muddled with the separation trauma your son has had so I think just watching and waiting is a good plan for now.

DS was diagnosed aged 10 in y6. I would honestly have said similar aged 6 or 7. He was always happy at school or so it seemed to me. What I learnt sharply in lockdown was that he'd been masking and there was lots of difficulties at school that I wasn't aware of because at home he was relaxed.

He has certainly changed as he's got older and is now much more rigid. It isn't exactly to do with routines but can struggle in holidays and doesn't cope well with lots of new places (eg going away for few days to visit friends and family. )

He always had good eye contact and empathy which are the stereotypes you hear about before you know what ASD is.

He hates haircuts now (didn't bother him when younger).

I would say get him tested. It is to everyone's benefit but most of all his. If he isn't then no harm done. The transition to secondary school has been really tough and without the support of the senco it would have been so much worse.

As an experienced teacher I would reiterate this excellent post. They won't raise discussions for nothing. There is nothing to be lost by exploring what they are saying. Waiting lists for support are so long.

My DDs autism presents as extreme academic ability, relatively slower processing and working memory, audio sensory overload, stress at changes and others breaking the rules.

Mornings: DD sometimes has panic attacks that recently have lead to involuntary muscle movements / tics particularly in the morning for no reason that DD can pin point. We have permission to park near reception, for me to register her so she isn't late and then we go and sit in reception once everyone else has gone in. The SENCO or her pastoral lead then pick her up and she either chills in their office and goes to First lesson or spends longer with them to reregulate.

Lunchtime: Cafeteria is far too overwhelming so DD takes packed lunch, she can either go to movie club which is open to all and silent or an invitation only small group which can be more sociable and she has permission to listen to music on her phones and use her noise cancelling headphones, this has made a massive difference.

Toilet pass: hand driers are the spawn of the devil according to DD, she can use the toilet during lesson time when they are quiet or can used separate ones that only have one cubicle in the Send area that have no handriers.

2 minute early pass: allows movement between lessons to avoid the crowds.

Summer reintegration: tour of the building during the time year 7 summer camp is on and on inset day whilst it's quiet to reduce anxiety about going back.

Uniform adjustments: DD doesn't have these but often schools will allow polo shirts instead of traditional shirts. Changing in a quiet space/accessible toilet instead of loud changing room.

Tangle fidget: originally provided by school but have since bought replacements, check which fidgets your DC school allow.

It has been flagged that DD will likely need extra time in her GCSE but that's a few years away yet.

In classroom: DD is not to be cold called the teacher asks her a question and then comes back to her for processing time. She sits alone or with other quiet students, she isn't to be used as a good role model and have disruptive children sat with her.

There are some more that I can't remember now.

@usernamebore sorry the above was for you, I forgot to tag you.

I went for an assessment with my Ds on advice of camhs - he was first observed then I had to go in and give his life history.
I said as soon as I got in there I don’t think my Ds has autism so feel I am wasting your time. She said during the observation he scored for autism. I missed some subtle things like she said he looked through her rather than at her , he does have friends but when he talks about friends . It is like he has read a book about friends rather than what he has experienced.
Now with a diagnosis I recognise his struggles more - he also has adhd aswell which was more noticeable to me but he is just my Ds . I am thankful for diagnosis as he has had some real struggles in secondary school due to been completely overwhelmed by it all . It is due to his autism and school have tried to support that.

There is a saying if you have met one person with autism you have met one person with autism.

You situation is more complex due to the early years but still worth exploring - without the steered typical traits of autism doesn’t mean it isn’t

My 16yr old has ASD. The reason it's a spectrum disorder is because not one size fits all, same with most nd people. It can be worrying/daunting/disappointing and a whole range of emotions if we suspect or are told our children might be nd. I think partly because what we're exposed to a lot of the time are the difficulties that some children have or the extremes in behaviour that they can display. I think of it like reviews. People are more likely to leave a negative review than a positive one as when a service is at an expected standard or good enough why would we shout about it. I've never sought any support or help because my nd child met his milestones at the expected age, but when he wasn't walking by 18months I did. A diagnosis doesn't have to define anyone but it can be useful especially in education for extra time in exams etc. When we have children they're little bundles of potential and we can imagine all the things they might achieve as they grow. Being nd doesn't change this. Every child can grow to reach their potential. Try not to overthink and compare your child to others to see if they would fit a 'label' carry on enjoying them for who they are and go with the process. If they're assessed and are nd it doesn't take anything away from them but may help you put things in place as they get older and might need additional support.

My son never displayed extreme aggression or behaviour that's been unmanageable. He likes routine and structure. He lacks social awareness and can come across as blunt - he doesn't sugar coat anything he's very factual. He attended a mainstream school and is attending college in September. A formal diagnosis meant that the support could be in place to help him achieve these things. He had extra help with some subjects and an adapted timetable so he didn't do MFL and this time was dedicated to core subjects where he struggled and needed additional learning like English.

@Singleandproud thank you so much - that is very helpful. I am seeing my son in so many of these posts @ListsWonderfulLists in particular. DS just cries when he gets overwhelmed - no tantrums or rage or anything. The poor thing just bursts into tears, which never stops breaking my heart.

OP- sorry for hijacking - but as many are saying on here, it is always worth keeping an open mind, as things change, and I was adamant by son was not ASD (and argued with people on here about it), until things got worse and the signs were unmistakable.

Sorry just to add having the diagnosis meant that us and school were better able to communicate with him. He doesn't sequence so instructions given need to me very stepped out and he doesn't get inference. If I ask him to put the washing in the tumble. He will do just that - on top of the dry washing that's in there. We also don't use abstract phrases with him or things like 'you're full of beans'. My friend once said this to him when he was about 5 as he was excited. He pointed out that he didn't like beans 🤣

Yes teachers see hundreds of kids and im
sure are well able to spot one who is “different”, but they’re not likely to be trained in or come across kids who have had the kind of early life experience your son has had, and probably no professional is able to say concretely, at his age, whether the things you mention are a result of neurodiversity/his early trauma/just a normal quirk or a combo of the above. There is also a whole generation of kids coming through who have been affected in different ways by covid and their specific circumstances during that, and no one yet has any expertise in the impacts of that and how it presents.

So I wouldn’t say that just because they’ve flagged something it means they are right about what it is. Yes he may be different from his peers in some ways but they aren’t necessarily right about why.

It’s totally normal for little kids to have things they are interested in/obsessed with. It’s also normal for some kids to feel overwhelmed in big noisy environments and to be shy in new situations. Many many neurotypical adults are like this, never mind kids.

If I were you I would just watch and wait and keep giving him all the love and support you are doing anyway. If he does have issues they will become more apparent later.

This thread is making me nervous about my own ds.

He has a lot of quirks that I started a thread about years ago and was told all kids are like that, he is 10 now and although growing out of some of the behaviors, I am certain he is masking them.

He hasn't worn anything with buttons on since he was 4 (I'm dreading high school next year when he has to wear a shirt, he tells me he's not bothered about them now but wouldn't wear a polo shirt to a disco recently)

He doesn't like being alone on a floor in the house, runs back into the room quickly if we ask him to fetch something from the kitchen and there's no one else in there.

Still hates a hand drier, Hates it when a lorry/bus/train does that letting air out noise thing.

Still sleeps under the covers, is awake at the crack of dawn and shouts for us to get up with him.

He hasn't had any issues at school as far as anyone has ever mentioned, although he hates it If he's ever behind on work and the teacher he had last year wasn't a good fit for him because she was a bit ditsy and they kept running out of time to do stuff she said they were going to do, and had a habit of punishing the whole class if a few were messing about, which my ds was furious about. (The teacher is question absolutely loved my ds)

The thing is, I know all these all traits point to the obvious but as he masking so well at school, he would be absolutely mortified if I was to make them aware, he hates it when I try to talk to him about his struggles but reading about how many struggled with their transition to high school, I'm not sure if I'm doing him an unjustice if I do nothing.

@DamnAllTheJellyfish he doesn't necessarily have to know to begin with, when you go through the assessment process you give the developmental history without him there. He goes for the ADOS which is just playing with toys and reading a books, some cognitive tests which are fun and then you get the assessment.

Getting tested at Primary school probably wouldn't have done my DD any good as she was able to cope and her quirky behaviour wasn't particularly out of the realms for a very bright only child.

My DD knew she was different when she started secondary and wasn't coping the way others were and did the ASD online test herself and scored really high, I had my suspicions previously but hadn't quite saved up enough to go private before she did the test.

So as I advised the OP, makes notes of anything quirky, save up so you can avoid the NHS wait list and enjoy your child for all their themselves now. If they become an issue in future you will be well prepared to take action.

I think you are absolutely right not to want to rock the boat. If your DS is coping well despite all the disruption in his early years then I can't see that it will be helpful at all to put him through a diagnosis process where he will feel that he's different or 'less' in some way.
Clearly if he is having difficulty then it's time to step in but if he is managing well I'd just be working on any issues which have arisen through the lack of attachment he suffered.

Oh knowing what I know now, I would absolutely 'rock the boat' - in fact why is checking out the possibility of a diagnosis even seen in that negative light? It wouldn't be viewed like that for any 'physical' illness would it?

Look- your son is either ND or NT and time will tell. You could use that time to figure out how best to parent him, or wait until shit really hits the fan. That's all I'm saying.

Christ no!!!!

If only I’d acted on my daughter’s very very tiny symptoms she wouldn’t have become a school refuser.

School gets more and more difficult to navigate as they get older. Don’t end up with a dc in ASD burnout from trying to behave NT for so long. And then watch them crash out of A levels.

He NEEDS a diagnosis.

A diagnosis shouldn't be seen as only helpful /useful/ needed at a crisis point, surely as parents we would want our children to not ever be a at a crisis point in their life?

Surely there is some middle ground between where the OP is at now - she feels her son is doing well and doesn’t need additional support - and crisis point? Wouldn’t that be the time to seek diagnosis?

As things stand, he might not be ND at all, and far from reaching crisis point might grow out of all these behaviours. This is a child who has already been through some really difficult things at a very young age. We know that trauma can present in ways similar to ND. It is far more likely in these circumstances that this is the cause here. Personally I’d just keep a close eye on him, as it sounds like OP is doing.

Keeping a close eye = doing nothing.

In my area CAMHS has a three year waiting list for autism assessment. You don't want to be at the point where things get incredibly difficult before getting on the end of that waiting list (if you get on it because they'll do their best to kick you off the service if at all possible).

It’s a balance though isn’t it. OP isn’t doing nothing - he is seeing a play therapist and having his needs met. It’s not going to help those services reach the people who truly need them if they are overwhelmed by people who don’t need them.

If the OP is in a position to go private then the best plan would probably be to plan to do that if the need arises. But I guess if they aren’t able to do pay for that then there’s no harm (to them) in getting on the list. Based on what she’s said though, he wouldn’t get a diagnosis if seen tomorrow.

This exactly the same for my 6 year old son. He has siblings one with mild presentation ASD and ADHD diagnosis, one with severe presentation ADHD only diagnosis. The one with ADHD only, a diagnosis and medication has helped. The one with milder dual presentation, I am not convinced a diagnosis has helped. They don't like taking medication and tend to use their diagnosis as an excuse. They have also developed traits they didn't have after reading about them. I honestly think they would have been better without.

Consequently I am watching and waiting for my son, who is eccentric with special interests, has sensory issues and very restricted eater, can be unknowingly rude to adults on occasion (saying things like 'obviously' at the end of his answers to innocent questions about what he is doing or similar, but can also be very polite and friendly) who struggles when conflict arises with peers, but most of the time is well liked, social, funny, doesn't need routine, enjoys days out and happy to go anywhere, loves holiday clubs etc enjoys school, sports and hobbies and has friends and meeting all education targets. I ask about it every parents meeting and I'm always told they don't think it is worth pursuing, and I feel comfortable watching and waiting and only seeking a diagnosis if his struggles become more significant.

I forgot to add my son also has lots of stims. I thought they were tics at first and took him to the GP to ask about tourettes, and they suggested speaking to school to make a referral to a paediatrician but school said they didn't notice any and suggested waiting. I think school just don't see them amongst a whole class of going children but to us at home they are very pronounced when I pick him up and they are constant when he is home but less obvious when we are out and about. They change, but are things like repeated noises/phrases/smelling things etc I suspect this might become more obvious at school when his peers mature from more general fidgeting if he doesn't grow out of it.

Your son may be autistic. I would take on board what his teacher and play therapist have said about him. I would have him tested for autism at this stage. I know that you're not keen to do this because you don't want him labeled. You may feel as well that if he has autism that your a bad parent or that people will judge you.
It's not your fault if your son is autistic. It just means that his brain works in a different way to most NT people.

If you get your son tested and you find out he has autism it means you can access service's and possibly get extra money benefits which you can use towards the cost of bring him up or say for extras like horse riding, swimming lessons ect.

You can put certain things into place and get him any extra help he needs to make his life easier and better. In effect your working towards him reaching his full potential now and in the future.
Some kids can cope up to a certain age with autism and can mask things well. As they get older it's harder to do and the fallout when things start to go wrong can be horrible for the child and far harder for the parents to deal with. Reading some of the posts here that have parents of older kids dealing with the fallout on a daily bases have put up shows that early intervention can help a lot.

One of my friends has a teenaged son with autism. She had tested him early on, got access to professional help and as a result he is doing well now in a specialist class in secondary school. She knows other kids of his age and younger that were not tested until they were older and they are not doing as well because of the lack of early intervention.

This is the first thing we noticed. To the point we were considering a Tourette's diagnosis, then high school hit and everything went very very wrong.

Thank you so much I feel like you really understand where I'm coming from on this. As will show from us starting play therapy unprompted, we'll do whatever DS requires as needed, but I feel like while he's doing well I'd like to use this time to work out whether it is due to all his trauma. Which both the teacher and the play therapist have said could easily be the case. I will save and have money available for a private diagnosis if this is necessary in the future. This seems to be a very polarizing topic!!