Really struggling with 9yo behaviour, possibly neurodivergent - don’t know where to start

[WeaponisedPoliteness]

I am really struggling with my son and I don’t know where to start. I suspect he is neurodivergent, definitely inattentive ADHD, but I wonder if more is going on too because his meltdowns are explosive. We approached the school when we were at what felt like crisis point (most interactions were negative at home, lots of crying), and the SENCO was helpful and told us she’d be in touch soon with her report and links to resources to help us…this was months ago. Nothing since then despite chasing. His teacher chased too and got nowhere. Things did calm down a little bit now it’s risen to a peak again, and it feels like quite an unhappy home.

I was under the impression that we’d need referral from the school to proceed with any assessments etc so I feel stuck. I have googled private assessments - I don’t mind paying - but it’s hard to know who to go with. We live in a bit of a shit rural area so not a lot around us. Also unclear if we need a referral from school or gp?

I think an assessment would help because if I knew that he had a diagnosis of x, it would help me to understand his behaviour, why he behaves in this way, and how to better get through to him. And help manage him.

It’s putting a strain on family life and I’m feeling pretty miserable. We all are. Don’t really know what I’m asking really, how to get started with private assessments I guess. Especially when I don’t know what he needs assessing for!

If you’re going private you don’t need referrals but they will likely ask for someone from a setting other than home to fill out a sheet regarding behaviour as it helps them get a broader picture. Perhaps read up on ASD and ADHD, even if you don’t get an immediate diagnosis it can’t hurt to use tactics for helping manage emotional regulation they certainly won’t harm anyone.
Oh and you can ask for him to be assessed for both Autism and ADHD. They have different criteria so you may need two different assessments. Reading up may help you figure which one to go for first but they often appear together AuDHD is the short hand.
We used ADHD360 for our initial ADHD diagnosis and they were ok but a bit blanket on the meds and there wasn’t much room for nuance, plus they never really spoke to my son about the medication effects. So ok but I’d probably say try someone else. I would not go for anyone who promises fast results or overnight. Try your local NHS website they may have recommendations.

Wanted to chime in as I have a similar experience currently with ds10. He actually told us he thinks he has asd and/or adhdh

school were sympathetic but ultimately can’t do anything because he has masks very well at school and there are no concerns

GP has put us on nhs referral pathways but it will take years. They totally refuse to let us speak to a GP in the meantime which is crazy. They initially insisted the referral had to go from school but I stood my ground.Had a Google and getting a private diagnosis doesn’t seem to be difficult if you stump up the cash. Many places do the assessments remotely so doesn’t matter too much if you are.

however, I’m unsure how getting a diagnosis will actually help our son

i’m thinking of booking him a session with a child psychologist

like you I’m quite bewildered as to what is best to do next, it’s very worrying and both the GP and school don’t really want to engage

Thanks both. I have found somewhere that does combined assessments (autism and adhd) so I’m going to pursue that. I like that they insist on in-person assessments and they are clear that it’s not a quick process (I checked thanks to your advice @Pashazade).

I have a family member who has been going down the nhs route for her son for several years, and she said there’s no point going private since this won’t be accepted by anyone, especially if you need to apply for an EHCP (not that I think we’ll need that, at least I hope not); it that seems awfully defeatist. It’s also making me wonder why anyone would bother going private at all?

It’s so hard to know what to do. DH is concerned about labelling DS, and like you said @Clearinguptheclutter, isn’t sure how it will help. I think I was hoping that it would just help me to understand how his brain works, and how I can help him…and perhaps help DS with his self esteem - I think he’s aware that he’s different from his peers and struggling socially, and that we’re frustrated with his behaviour, so maybe a diagnosis would help him to understand himself too.

I would say OP, the diagnosis is more important for your child’s knowledge and self awareness than other people and you can get the ADHD drugs privately too. EHCP should accept a private one, but it will also give more weight with the NHS assessment if you get that too. Ours was basically pushed through because we already had a private dx. Knowing is so important so he’s aware there is nothing wrong with him, he’s just wired differently. DH was suicidal as a teenager because he thought he was wrong because he wasn’t like anyone else.

I was in a similar situation at one point.

I would suggest that you speak to your GPand get the ball rolling in terms of referral to CAMHS or paediatrics - both are a possibility, but it depends on how services are structured in your area. This will take forever though so, you should look at other options too.

I would recommend you get him privately assessed by an educational psychologist, a speech and language therapist, and an occupational therapist.

You do need to use the right people. Try SOS!SEN for advice on how to go about this.

Their reports will flag up anything that looks like asd or adhd and you can then use this to get more support from the nhs and/or Education.

I also suggest you read up on PDA.

What charities do you have locally that could help? We have a few, Google might be your friend, they might have some great resources / support you can access

I don’t think it’s true that there is no point going private

a colleague did after waiting too long for NHS. Got private diagnosis within 2 weeks and got medication which has benefitted her son immensely. His school accepted it also.

what has been tricky has been transferring the medication precscription back to the GP (as long term private prescriptions are extremely expensive). She eventually managed but some GPs just won’t allow it.

That is a problem in some areas, but not all. First step is GP. You can ask GP if you go private whether they will accept the diagnosis. If your GP accepts it, then it will be official across all the NHS and with the school.

For now, as a pp said read up on PDA and on ADHD and Autism. Nothing is stopping you from applying basic parenting techniques for a neurodivergent child. You won’t get parenting tips with a diagnosis anyway. You will have to do this research and trial and error by yourself after diagnosis. So you might as well start reading up on PDA and AuDHD and trying different techniques to see what works for your child and you. There is a lot of diversity within AuDHD so there isn’t any set of parenting techniques that works for all neurodiverse children.

I would consider at first for calming things down as you say he has explosive meltdowns going to a low demand environment. Reduce the demands on him, and if he has a meltdown ensure there is no shaming or punishment for it.

I feel you OP. I have suspected I have inattentive ADHD for a long time and I suspect it with my son as well. He is bright but very daydreamy or hyperfocused. We hit 8 and are nearly at 9 and we get these rages that are unlike anything I've seen. He's started hitting sometimes, others or things. He can't seem to control himself at all and then when he calms down he cries and wants cuddles and looks absolutely beaten by it. This doesn't feel normal and he seems to cope at school but meltdowns at home.

We got a private ADHD and ASD assessment for DS and have had no issues with getting him on the school SEN register with it. We didn’t have any kind of referral from the school and they just filled in a couple of questionnaires as part of the assessment (the main parts of the assessment was a 2 hour assessment with DS and a similar length interview with me and DH).

Diagnosis has helped us have the confidence we weren’t barking up the wrong tree and helped DS with understanding himself. The diagnosis report was lengthy and gave lots of useful advice for both home and school.

Do you mind if I ask which service you used for diagnosis please?
GP is willing to refer my DD through choose and book but they won’t do a shared care agreement for medication. We cant afford to pay for medication forever but obviously want a diagnosis as soon as possible (we could pay for the assessments)
im worried about paying for the assessment and then we can’t get the meds on the NHS, which seems ridiculous if you use a provider the NHS use themselves, it’s exactly the same assessment just quicker !

We were on the waiting list with the NHS for 2 years and they had a back log of assessments because of Covid they NHS phoned to say we would have another wait because of the back log and asked if we wanted to be transferred to another list I think this is called the right to choose we chose to go on another list we turned out to be a private clinic in Paddington they have one in Harley street anyway they phoned us and we had an appointment book within the next couple of weeks for the next month was very happy i yes to that because having a diagnosis is the clarification that you need sometimes as a parent to help you move forward as use different parenting approaches as well as open up the door to support as you know what your dealing with hard road to be on

Hi sorry I haven’t worked out how to send direct replies to someone’s post dod try to copy and paste name but didn’t work

ours was autism clinic London Paddington site and recognised by the nhs

If get the school to do the paperwork for an assessment you after they make contact of accepted you will then be put on the waiting list after this they may tell you the average waiting time you can switch to the right to choose which will cut down the time which is what happened to us but we were already on the waiting list please google it as there lots of information on this and gives you access to different clinics is best to get the assessment done with the school and then decide from there as this is a referral from the school which helps

This may be helpful in the meantime:
https://londonwaitingroom.nhs.uk/

My second child (first boy) has HFA (non verbal). Both my husband and I could tell he was “different” from being a few months old. I did the CHAT online before he was two and it came out as “borderline”. By then our pediatrician was involved. We live in Greece and in order to get an official diagnosis for ASD the child has to be 5yrs old.
I’m a bit surprised you are only just suspecting your son is neurodivergent now at age 9….
No disrespect, but start to read up on it and try whatever you can to moderate his behaviour (regardless of an official diagnosis), especially when it is starting to upset your family harmony. Early intervention is key in helping them manage.

I know it might sound a bit weird, but have a good look at his diet, as well as his educational needs. Also try to observe what is triggering his meltdowns. Neurodivergent people like structure and routine. Talk to him and try to find out what his issues are. Is he tired, hungry, overstimulated, bored ? Reduce his screen time, get him into swimming or something that relaxes him.
Basically, you need to do whatever you can to help him and be tenacious in doing what you feel is best for him. I have no idea what is available in the UK, but I would presume there are far more resources available to you, than there are here! We fought tooth and nail to get what we felt was right for our son. It can be emotionally and financially frazzling!
Just don’t despair or lose hope. Our son is 24 now and is a lovely, happy person who can do so many things independently, despite being a vulnerable adult.
You say you would like a diagnosis to be able to know what to do. Remember that even if you get an official label for it, he is a child first and foremost, so focus on that. I wish you all the very best.