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!

I think what is hard here, @Tetherless, is that neurotypical parents with little experience of autism, are not necessarily going to know if an autistic child's needs are going unmet, and I guess this lies behind the common experience of quite significant difficulties accumulating unnoticed, and then only getting recognised at a later point, when a child's mental health has become compromised.

One of the arguments in favour of exploring possible indicators when they arise, is that it provides the opportunity to better understand a child and their needs, including from the detailed individual insights generated through a rigorous assessment.

Sounds exactly like my DS as a child.

If I told him we were going out at 6pm and happened to be ready to go at 5.55, he would want to wait til 6.

Liked to have a plan and stick to it.

Became obsessed by certain things and had to know every detail about them (which came in very handy when he came to do exams as his memory was second to none and he was super focussed, still is)

Look, if I’d followed this kind of advice for my own child I’d have been a few grand down and put us both through a whole lot of unnecessary stress and time, and wasted a lot of other people’s time for no reason at all.

If the kid was really struggling with stuff day to day then yes, worth investigating further. But when kids are very young and when there are other factors which might explain the issues (as was the case for my child and is the case for OP’s son), watch and wait (while responding appropriately to the issues that arise) is usually the most sensible thing to do.

NT people aren’t all the same anymore than ND people are.

@Tetherless Quite so. And they may also have unmet needs. Which an assessment may also help to identify, should OP and professionals consider one is merited.

And in these circumstances, should an NHS referral for assessment be accepted, I am not sure why the question of needing to pay privately would arise?

Really there is a self-correcting mechanism here - referrals, and referrals being accepted by NHS autism teams, suggest there is enough in a situation to merit a thorough examination, to find out either way?

The main reason used by people on here to justify seeking a diagnosis when the kids are fine is because waiting lists are long and by the time you get to the top of it, the kids might not be fine anymore. Which makes sense in some ways. But if you have the ability to pay privately and so avoid the long wait then that reason falls away.

In a situation where the OP doesn’t think her child is ND, the professionals who actually know her child say that his symptoms could be caused by something else, and there is no need to get on a waiting list, what is the positive reason for seeking out an NHS referral now?

OP, I could have written your post - in fact I wondered if I had without remembering! I will PM you if you don't mind?

Of course x

Can I ask anyone on this thread, I also have a child who's just finished Reception and in my eyes is totally fine but teacher has suggested possible autism - what should the next steps be? Ask school for a referral?

Funnily enough I was more 'concerned' about my other child who is far more prone to meltdowns but does fine at school (I don't think it's masking as he's usually genuinely happy when he comes home and misses school at the moment!) and no-one's ever mentioned any concerns to me about him.

I should note that I don't see autism as 'negative' per se, in fact I have long felt I lean towards having some autistic traits but again don't feel it's ever held me back in or bothered me in any way. That does mean it's easy for me to say 'oh he just gets that from me' (or from DH!) so perhaps not entirely objective.

@NogginBopper I'd suggest you have a good read of the IPSEA website and make a mental note to revisit this approx 3 years before your eldest starts secondary.

It's the primary to secondary transition that often causes issues.

If you are ND yourself you're probably very good at meeting their needs?

@CaptainMyCaptain What type of strategies? Do you have any books to recommend?

OP's child is not going to be referred, or have that referral accepted if professionals do not think there are good reasons to undertake assessment. It's really quite hard to get referred!

My son never had meltdowns, he was happy to go wherever with me and could be distracted but he still had autism and adhd. Meltdowns don't define a diagnosis.

My son wouldn't have noticed if I left for 3 months and was always smiling and happy. He didn't cry until he started school. That's when the behaviours enhanced.

Behaviour varies between each person.

The fact you have 2 different people who work with your child both saying the same thing, you should really listen to them. Waitlists are up to 3 years - longer in some places.

But why ask for a referral in the first place? That’s the bit that doesn’t make sense to me when no one (including the professionals who have raised the issue) has suggested it is necessary.

Work in this area- given his age, the things you have mentioned and experienced to date the indicators he is showing ( spotted by those working with him) at present could be- asd related, trauma related or attachment related. Very fine line at times to distinguish between some of these and given there has been a lot of upheaval to the wee man to date then I would also be suggesting a wait and see approach. Absolutely support him as his needs arise and seek an assessment in future if necessary. For now you now what works- having at least one stable adult relationship, routine, structure etc. it sounds for 6 he has developed regulation skills- as in you say he does express frustration, upset, feelings of sadness and with support/ comfort he copes well. As he gets older things may become more apparent so for now enjoy the lovely boy to you, the relationship you have and see how things pan out.

@Tetherless, I think if multiple professionals are suggesting it independently of each other, it's worthy of consideration.

I guess, as others have flagged, the other issue is the lead times.

Lots of us have kids like OP's who are sociable and hold good eye contact, and do OK in the early years of school, but who progressively struggle. Lots of us have great experiences of inclusive primary schools who routinely make plenty of adjustments without even discussing them. But then, boom, they hit secondary, have to navigate peer relationships independently of teachers and parents, are suddenly not understood, and are without the informal adjustments that have kept them going until this point. Whilst one should absolutely be able to negotiate a SEND plan/request reasonable adjustments without a diagnosis, it's not always easy, especially if DC does not present in a way, or have needs, that school staff readily recognise.

If you want to explore a diagnosis at this stage, perhaps so that the detailed assessment could inform an EHCP plan, the timeline looks a bit like this:

• Seek referral. Get told to come back in +3 months.
• Seek referral/get referred. Referral accepted. Assessment conducted. +24-36 months.
• Receive detailed assessment report. +6 months
• Request and EHC assessment/assessment/issue. +5 months (minimum)
• Appeal against the inadequate EHCP. +12 months
• Adequate provision in place. + 3 months

Total time to get DC's needs adequately met in secondary school = Four and a half years +.

So if you apply in the summer term of Y7, adequate adjustments may not be in place until GCSE's are actually being sat.

If other people are having better experiences in their areas, please do say.

I've been retired a good few years so I'm not up to date. I'm thinking of things like their own safe space to go (eg a chair with their own name label they helped to make on it for a child that wandered and couldn't settle), a pictorial timetable so a child knows what is happening next. A particular song I played to call children to the carpet worked extremely well for one child who was diagnosed with SEN and ended up going to a Special School. Their own named mat for table based activities that could be moved anywhere and gave the child their own defined space.

Just a few things off the top of my head. I was working in Reception.

Some child did turn out to have ASD some didn't. The point was to work with the behaviour not wait for the diagnosis

@CaptainMyCaptain Sounds like you were doing a good job.

Thank you.

Thanks for the website rec! Do you think it's worth starting any ball rolling now (starting year 1) or is it a waste of time if he's doing fine - thriving academically, and loves school etc?

@colcoldcouture I'm at your 4th bullet point and that part alone has taken 10 months (including tribunal for refusal to assess).

I can't say @NogginBopper. None of us has got a crystal ball, sadly! Unfortunately the system such as it is not really set up to keep DC flourishing - more to address (very slowly and incompetently) when there are already problems.

But knowledge is power.

@NogginBopper if your DC is fine at the moment then I would just write down any concerns (I kept my list with DDs red book) and start saving. If you are on a low income you can do it into a Help 2 Save account at £50 a month and the government will top you up with 2 x £600 over the 4 years it is open of you make the maximum £50 a month deposit. Mine matured when DD was in year 8 which meant I was able to book her private assessment 6 months after she started to struggle at Secondary which was a huge relief, we had a 6 week wait instead of 4+ years.
If it turned out she didn't need it then I would have kept it and spent it on any overseas school trips or a holiday when she finished GCSEs.

Prior to starting secondary school she would have never hit the referral bar and I'm not entirely sure she would have hit it even after she started struggling as she does not have challenging behaviour or meltdowns, but internalise everything and shutsdown. School didn't recognize any ASD traits until AFTER her diagnosis when they knew what to look for as DD masks and at school generally her ASD comes across in subtle ways - until the days change and she has lots of supply or is off timetable.

Honestly you sound like my friend. Multiple people suggested to her that her DS might have autism when he was little - they didn't do anything about it because they didn't want a label. Now he's diagnosed, 16 and school refusing for the last 2 years. She keeps saying why did no one tell us? Meltdowns aren't part of every autistic persons experience.
Doing nothing in this situation is worse than doing something. If you look into it and he isn't autistic then there's nothing lost. Not looking it and then discovering when things get worse is a much worse outcome for your DS.