To refer or not?

[ihearttc]

This will be long so I apologise in advance. DS2 has just turned 11. He is and has always been very hard work. He was born at 32 weeks and although we escaped NICU without any major problems the past 11 years have been very hard. When he was younger he used to scream constantly, had delayed speech and literally couldn’t sit still. I questioned countless times whether he had ADHD and was told by every professional we came into contact with that no he didn’t so we never pursued it.
Fast forward to last year (he was in Y5) and with lockdowns etc, he had a really bad year. Couldn’t settle to anything, falling behind at school (despite being in as I’m a TA), constant meltdowns. He is very able in English, reading, writing and SPAG but really struggles in maths.

Spoke to SENCo at the end of last year who listened to what I said and read my massive list of things which I had noticed, he cannot concentrate on anything, cannot cope with change and has to be in control the whole time amongst many other things. She said they’d noticed some of them within school, and also how disorganised he was. Despite the fact they do the same lessons every day, he still isn’t ever prepared with his books etc. To meet him he comes across as charming, funny and articulate. No issues with friends, although he has lots of friends rather than 1 specific friends. He plays football to a high level and for the most part copes ok there although will often break down later. SENCo said to leave it until after Christmas to decide what I wanted to do and she’ll speak to me in January. His Y6 teacher said he’s very disorganised and struggling with the Y6 maths (he’ll learn something one day then forget it the next) but apart from that no issues.
I’m worried about High School, whilst he can cope in Primary I think he’s going to struggle with the constant change of expectations with different teachers and all the homework organisation. Genuinely don’t know whether there is an issue or not tbh, my gut feeling is there is something but he masks it well at school.
I’m happy to pay for a Private consultation if need be to get the ball rolling but no idea where to start.

Yes, I would pursue a diagnosis. I wouldn’t wait because if you want to go the NHS route you preferably want the referral accepted while DS is at primary school with staff who know DS well. And some private assessors have a waiting list at the moment.

Be aware if you go private and DS receives an ADHD diagnosis and begins medication it is not a given the NHS will take over prescribing. You may be stuck paying privately, at least until DS has had an NHS assessment. Although some of the points you raise could equally apply to ASD than ADHD.

@Imitatingdory

That’s pretty much what the SENCo said, I’d initially thought ADD but she said it sits somewhere between ASD and ADHD probably with traits of both but has coped so well up to now. Am I likely to get a referral etc within the next 6 months of being at Primary School? I’ve seen it from the other side, some of the children in our class have waited 18 months to be seen. If I went private who do I refer to? An Ed Psych?

Can you afford to get a private diagnosis? If so, I’d go for that asap. I think - but others more expert than me may be able to correct me - that a multidisciplinary assessment by child psychiatrist and child psychologist will look for ASD and ADHD. We decided to pay for a private assessment when DS was first diagnosed - that’s because we were told the waiting list was something like 18 months for an assessment on the NHS and we wanted to do what we could to support DS straight away (which we thought would be easiest with a diagnosis). I would recommend getting on the NHS waiting list but you might want to look into private assessments too, although anecdotally I have heard that there are now long waits for private assessments too unfortunately.

Having said all this - whilst a diagnosis will help with identifying issues and as evidence for applying for future support, it sounds like what you’re most worried about is the transition to secondary. Is that something the SENCo can support with?

Thank you for your reply. Yes we could afford a private diagnosis, the issue will be convincing DH he needs it. We also have private medical insurance through his work so I was possibly going to see if we could access somewhere through that.
The transition to High School is the main thing that’s concerning me. SENCo has said she will liaise with SENCo there but I’m worried he will fall under the radar without a diagnosis. I’m also concerned what other issues the teenage years will bring. He gets extremely angry which comes across with him being arguementative and volatile but he is actually very anxious about everything that he can’t control.

Have you considered PDA?

On the NHS you would get a referral before the end of primary, but you there is no chance of actually being assessed before then!

Privately, it would be possible, but some have waiting lists of months so you would need to act quickly. If you aren’t sure whether it is ASD, ADHD, both or neither you want someone who will assess for both rather than just one or the other. I also recommend you use someone who also does NHS work, there’s less chance of a potential diagnosis being questioned then. EPs can’t diagnose, only doctors can.

Have you been in contact with the secondary SENCO at the school that is your first choice? Don’t leave it to the primary SENCO. DS doesn’t need a diagnosis to receive support. The school must make their best endeavours to meet DS’s SEN regardless.

Yes PDA was something I’d also considered, just not sure if he completely fits if that makes sense. He is quite a complicated character!
Thank you, that makes sense. I shall do some more research.
There is only one school he can go to as we live quite rurally so all the kids from the primary go to the High School so both SENCo’s work quite closely together. That’s good to know, I was just concerned because his issues have the potential of making him just look bloody difficult and angry rather than seeing the reasons why he is behaving how he is.