In not pursuing a diagnosis for five year old?

[woodenwalls]

May be a controversial one.

DS is five and as he gets older I do think there’s possibly some SEN there. He is very reactive: loses his temper easily, screams an shouts (had a lot of that this holiday) - as a toddler his tantrums were awful, he’d claw at my face, pull my hair … I found him really difficult and I wonder if maybe some of that’s affecting us still. I can’t get him to listen; I’ve really made an effort with strategies that promise they work and they don’t 😩

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?

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.

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.

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.

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

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.

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.

Absolutely this.

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.

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.

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.

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.

I asked nursery outright; haven’t asked school.

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.

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.

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

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

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.

But in order to get on the waiting list it seems more than ‘I am struggling with my child’ is needed?

1. Fine at 5 isn't fine at 15.
2. Find out the process for diagnosis in your area. Even if you don't decide to pursue now, it's valuable to understand the process. It's MUCH either to get a diagnosis in primary than high school. Also in many places you do not go to the GP at all. In our area you HAVE to go through school and you get actively bounced by the GP back to them. In our school, they won't actively suggest there is a problem UNLESS the child's behaviour is significantly affecting others. This creates a ridiculous situation where parents are supposed to approach the school about concerns and make the suggestion of an assessment NOT the other way round. So don't necessarily expect school to raise it with you if they see a problem - teachers at our school are actively discouraged from doing this. This naturally disadvantages kids who don't have parents who know their shit or can't be arsed - some of those who perhaps need support more than everyone else.
3. We found ourselves in a situation where parents of another child were actively refusing to go down the diagnosis route. This caused massive issues for every single child in the class because the school didn't get even minimal money to try and support his needs. This had a massive impact on the teacher and TAs time to the detriment of all other kids. There would have been extra money available if they had got their act together.
4. In the end the above child ended up getting a diagnosis - but only after it was forced by other parents pushing on his behaviour being a safeguarding risk and outside services being forced to get involved and it nearly breaking the family apart. The parents and the kid were not popular for this decision.
5. It still takes over a year for diagnosis. An early diagnosis DOES NOT mean you have to take drugs. It means you can potentially get access for extra time / support in exams. This doesn't have to be taken up at primary. Many kids can be fine during primary and it only becomes problematic with the additional stresses of high school.

Have a real examination of why you DON'T want a diagnosis. Perhaps write them down here - we can give you feedback on these concerns.

DS has a diagnosis, but largely copes now. He has days where he gets overwhelmed by stuff and he's not on medication. We are using coping strategies and work around a instead to build his skills to do this, rather than asking school for billions of things. I don't anticipate problems until high school but everything is in place should he need it, which makes it much easier in the long run.

The only thing I would say is that there doesn't necessarily have to be anything negative from the school. Two things from the school that made the penny drop from me in relation to my daughter weren't 'negative' as such but were highlighted as slightly out of the norm, and when I put that together with my observations at home it made a lot of sense. I suddenly saw my ADHD sister in my daughter. We also haven't sought a diagnosis (at this time/yet/I don't know).

It can be difficult to weigh up what to do so you need to ask yourself really what would you want to achieve in terms of support if there was a diagnosis? Can you access that support without a diagnosis? Not every neurodivergent person crashes and burns but you can't tell that in advance. Start with the school first and foremost as a two-way communication.

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

Do you know what - forget it. Why the hell can people not just report? MN are on the thread as posts have been deleted.

If I knew for sure he has Sen I’d want a diagnosis. As it is I don’t know and it isn’t a definitive test as we know.

The thing is though, I don't think you're supposed to know for sure, you're not qualified to. You can only suspect - the referral for a diagnosis is to those who can know for sure.

That’s why you go to the experts and let them use their knowledge and the tests at their disposal.

How is your DS with your DH? Does he behave the same for him as he does for you?