In not pursuing a diagnosis for five year old?

It’s worth trying to get him on the waiting list though if you truly believe there is something going on, even if you change your mind at a later date.

The waiting lists are so long, if you reach a point where you do want him assessed, you might not get that in a time frame that offers him any help at school. The number of referrals we make in year 7 that still haven’t reached the top of the waiting list by year 11 is growing. It is now a 6 year wait here. To not at least seek advice from a professional is neglectful.

That being said, I agree with PP’s that your OP has a few red flags.

Start with school. Raise concerns with his teacher and keep an open line of communication.

I would ask his teacher about it and see what s/he thinks.

As the education system stands now you need to get on this and get your back covered asap. Get to the gp and request a Right to Choose referal for asd and adhd. In the mean time, find you local LAs SEN support offer and self refer to everything relevant. Keep all communication in school and other agencies in writing, you will be grateful of having a paper trail from the start. Read the schools inclusion and sen policies.

At that age the school would do the referral and it will take years. Might as well put it in as it takes a long time and if doesn’t come to anything then nothing lost.
Also the people who asses are specialist at dealing with challenging behaviour - so don’t worry if he doesn’t play ball there’s multiple ways that they can assess.

OTOH, nursery didn’t flag anything, neither have school. I’m reluctant to go to the GP; dh wouldn’t be on board and it doesn’t seem like support is very forthcoming anyway. I guess what I’m asking is AIBU to just … leave it, and struggle on?

Have you asked them outright because they often won’t flag anything unless they think the parents are onboard with hearing it? If they don’t see anything at all then you will struggle to get an assessment on the NHS because he won’t reach the threshold to get to that stage, so you would have to go privately.

Just remember that if your child is ND then you are doing them a massive disservice by not getting them the right support and help that they will need. Impacting their formative years in such a negative way could mean they fail to ever reach their potential or achieve well in life.

Said like a true parent of a neurotypical child.

the assumption, if your child has meltdowns and struggles with self control due to their neurology, it is so depressing she smug parents with neurotypical children tell you to improve your parenting. You’re lucky to have a child who can respond to traditional discipline. When you have a neuro diverse child, they cannot. So you try all the parenting tricks in the book and they don’t work. You feel ashamed and everyone around you blames your parenting. It really sucks. Please don’t do this. Perhaps consider that it wasn’t your stellar parenting hat made your child conform, it was their ability to do so. You got lucky. Trust me, we parents of sen kids have read every parenting book going- we need your support not your judgement.

If you think he needs support over and above his peers, then I would consider pursuing a diagnosis, purely because it usually takes years to get one. A friend knew her child had autism in reception; the school insisted she was wrong. Nearly 6 years later, as it has become harder for the child to mask and for the school to pretend there weren't additional needs, they are only just starting the EHCP process. Let me be blunt - most schools don't like children with any sort of SEN or disability. They may write the correct words on their website when trying to tick the right boxes and win over potential parents, but the reality is, they resent having to provide an education to anyone who doesn't fit a neat box.

Start writing down things that you think might be out of the ordinary and not age appropriate. Dates, times, aggression, length of tantrum. If you do ask for a referral you'll need evidence.

My DD school didn't notice anything. I asked twice. Then at the end of year 1 they noticed. I've know and raised concerns since she was a baby.

Absolutely this.

Without a diagnosis, the school won’t be able to provide the support he might need. I never understand parents who know something is wrong but do nothing about it. I remember being told I was “labelling” my son. Because of that labelling and the support he’s received, I’ve got a functioning young teen. Seek the diagnosis. Lists are long so the sooner you start the better.

It is a dangerous assumption that school staff will spot SEN or do anything if they do. There are very strong incentives for us not to spot things, experience is lacking in some/many cases and parents can react angrily.

GPs aren't always great either.

On the other hand, no decent professional who follows the NICE standards is going to diagnose something that isn't there.

Write a list of the things you are worried about and arrange to talk to the teacher. Start step by step.

I would speak to school or your gp to at least investigate. It may not lead to any formal diagnosis, but may improve life for you and your child anyway. What is there to lose? I initially reached out to the health visiting team who sent someone round to offer support, then it moved on to a few courses (it’s the norm to do a parenting course in my area before looking at any diagnosis), and finally we received a diagnosis years later.

I suspected my son might have ASD at 18 months. Everyone said he'd grow out of it, and it mainly being behavioural issues. So I held off seeking a diagnosis and drove myself mad doubting my parenting skills. He was diagnosed at 3 with ASD - seemingly high functioning to others. He attends mainstream private school and we have not disclosed his diagnosis to them but made them aware of some support he has externally. We are overseas so only had 4 month wait for diagnosis.
As others have mentioned if you are in the UK it is an incredibly long wait so it is best to get the ball rolling. My UK friends had to do a parenting course first as part of the filtering process before getting to the asd assessment, there are many hoops to jump so that might be useful as a starting point.
Is there anything else that makes you think he might have SEN?
My son from 18m used to bite, kick, hit, pull my hair, scream, terrible meltdowns, couldn't cope with any transitions, fussy eating, repeating what other kids say and do, memorising books from the age of 2, special interests - road signs, tractors, lining up toys, sensitivity to smell, noise, clothes etc.
Creche and school have never raised any issues because he masks. I'm glad I sought a diagnosis when I did as he sees an occupational therapist every week and we have a child psychologist to support. It meant we could choose the right school environment too - low demand (no uniform, lots of space, small class sizes, inclusive). I spent a long time pre diagnosis doubting myself and it was a lonely place to be.

If you don't seek diagnosis, you could be depriving your child of appropriate support. It may be hard to get, but he'll definitely have no support if you won't even go through the process of finding out if he needs it.

That’s the ball to start rolling-
start the process of investigating if he is -

JLou it's opinions like yours that cause problems for children. The support and parenting "classes" while her child struggles will waste some time and money but she should eventually get support for her child (been there, done that and cost the county a fortune that could have been avoided). A lot of damage will be done in the meantime but hey-ho 🤷🏻‍♀️.

They really didn't see my daughter as having a communication issue at all. They saw a happy smiley child. The moment she walked through the school gate she was smiling they didn't see the screaming I had had on the walk to school.

There was one incident where she went to the toilet just before break time and got locked out of the playground. She was found by another teacher upset. She was seemed fine when I got her from school but the moment we stepped off the school property she turned feral she clung to lampposts and railings, climbed a fence on a building site, screamed, bit me, I had to half drag her home as she was fully in flight and fight mode. Once she was home and in a safe place she told me what had happened. I raised it with the teacher that had her that day and they said yes this happened but she was fine so we didn't mention it. I told them categorical the child I picked up was not fine in the slightest and she hadn't wanted to go to school on case it happened again. It happened on a day where her usual teacher was off sick which didn't help. The school arranged for her to walk a teacher through what had happened and how she felt as a debrief. They validated her feelings and then gave her an action plan of where to find help if it was to happen again and how she could access the playground too.

Talk to school. Maybe it is you, but that doesn't mean you ignore it. You should be getting support with your parenting. With you saying you struggle connecting with him there is a good chance it's you, he's probably acting out because he is seeking connection. You need to address it now or he could have some serious mental health problems as he gets older.

Some children with ND find school fine because there is structure and regime so they know what is happening every day and every week. This could be why school is fine but home life not.

You should definitely speak to someone as it’s unfair that he could potentially miss out on support.

It would mean people responding are far more likely to have been in your position. If you suspect SEN then that’s absolutely the best place to put it.

Don't wait for a nursery or school to flag concerns, go along to your GP and get the process started.