Potential ADHD - should I get DS tested

[youwot]

Sorry, long but I want to give all the context.
DS is now almost 13. School in year 2 discuss potentially screening DS for ADHD which didn't come as a surprise to me as I'd noticed he sometimes struggled to maintain focus (depending on the task) and showed a number of typical traits, but none of the other common ones, so I'd been wondering about it. School did do an initial assessment but said he didn't even meet the criteria for further testing as it stood the scaffolding they had in place would be enough but this may change as he got older/was expected to be more independent so to keep a watching brief.

He's never disruptive and generally has excellent behaviour and can curb his more impulsive behaviour, interrupting, asking questions off topic, has some trouble with organisation etc. Not to a serious extent but needed more reminding that other classmates and tended to need instructions repeated, reminders to stay on task which is why they flagged some investigation.

At the end of year 7 focus didn't come up at all in his year end reports, literally the first time ever, so we thought perhaps he was applying the strategies to help him. He's now in year 8 in the same school and it's come up again. He's extremely bright but his organisational skills in year 8 is lacking which is affecting losing things, being prepared for lessons and particularly homework and his performance in assessments - doesn't finish, writes the minimum despite knowing the work.

School have talked to us again about it and suggested that we might want to investigate. They've run initial tests and in language and comprehension he's in the typical range, but in focus he's just borderline ADHD. It's very borderline. They said that hormone changes can exacerbate things and suggested that we may want to explore diagnosis. They did say that he was so borderline but have some more support in place officially for exams e.g. more time, being able to type (he's always struggled with handwriting as he's left handed, but they did a test and he's average speed and legibility). They also said that typically despite being borderline an official assessment would likely yield a positive diagnosis. School were very clear it was completely up to us and they'd support whatever decision we made and in the meantime ensure all class teachers knew he needed more prompting and a close eye kept.

I want to put him on the list (we can't afford to go private for diagnosis atm) but DH and DS himself doesn't think he needs it and would like to wait. DS has read the info from the ADHD foundation aimed at young people and doesn't really recognise himself and thinks that he's not been applying himself like he did in year 7.

I would tend to agree since he's so borderline and know he's been more preoccupied with other things this year (phone, coding, games) but the hormonal change gives me pause and I see no harm in getting investigated or at least being on the waiting list. But not sure whether to push for this or not. I want him to have every chance and I don't want him fighting against himself if it's not just a matter of application (although this is definitely a factor this year)

For others, did puberty impact ADHD in your kids? Is this likely to get harder for him as school gets more challenging and hormones are raging and what would you do in my position?

I would try to convince DS to agree to a referral.

For DS2, puberty increased his impulsive and risk taking behaviour. Previously they had been well managed as long as he got enough exercise/sensory input.

I’d get him assessed. DD2 struggled more and more, as she went through secondary school. By A levels, she was working three times harder than her bright friendship group, fuelled by filter coffee. We knew there was something wrong, but didn’t know what. Her apparent problems were comprehension and organisation.

I didn’t know how much she was masking her inability to maintain attention for more than a few minutes; nor did we know coffee is a self medication for ADHD.

She succeeded as well as she did at school, because a routine was imposed on her; and all she had to do was school work. She completely fell apart at university, where there was no routine and her disorganisation just took over. Once she got the diagnosis of ADHD, she received considerable help like extra time for coursework and exams, a dictaphone to record lectures, a study skills mentor and a post grad to help with research.

Even now, she needs someone to deal with household admin; she can’t even cope with 3 saucepans on the hob, all needing different cooking times! (Her partner has to supervise the saucepans). Diaries, alarms, calendars, you name it, don’t work as she either loses them, or recognises what the alarm is for and forgets instantly (because she is already doing something).

It can be so much more than inattention!

Finally, DH is undiagnosed, but clearly has hyperactive ADHD. Just watching him is exhausting; but somehow he knew how to behave at school and never got into trouble - but he is not as disabled as DD2 by the forgetfulness and disorganisation! He only got a 2:2 at university though, where she got a first, because he spent 3 years in the library, reading railway magazines (because he couldn’t cope with reading the textbooks where she just worked harder).

Hi @BrightYellowTrain and @WeWillGetThereInTheEnd thank you both for responding. I've had another chat with him and he's agreed to go on the wait list.

What you said really resonated with me, as although he doesn't seem to have the same level as both your children, there's definitely a few similarities.

He uses alarms and timetables pretty successfully, but has been known to wander off from boiling water in a pan (a couple of years ago as I've not let him make noodles unsupervised since) but weirdly he can make several other dishes that require stirring or constant attention without any issue. He's never in any trouble at school and when he gets distracted he only seems to distract himself and nobody else so that's something! His comprehension is good, he's been tested for that, but the organisation definitely needs work.

It does seem that as life gets more complex and hormones increase it gets harder so for that reason alone it'd be good to ensure he has support. And although school is super supportive now, your point about University has really hit too.

Thank you both again.

Adhd360 costs £530 for an assessment. They work with NHS partners too, so GPs recognise the diagnosis and agree to shared care.

I can only speak from our own experience with regards to whether or not your ds will struggle more as he gets older. We've long suspected adhd in our son (just turned 14), who in many ways sounds like yours. His behaviour has always been generally good, he doesn't have emotional dysregulation or anything like that. But he ticks more of the boxes for inattentive adhd (though we suspect he is able to better mask the hyperactivity and impulsive elements).

We had parents evening last night and it's evident that he's beginning to struggle more, and his teachers are now picking up on more pronounced traits. This is despite him having a SEN passport in place (though I don't actually know what this means as there's been no communication with us, and teachers seemed unaware he has one). Essentially, some schools it seems won't step up the necessary support unless there's a formal identification of need, and that is not always obvious in Y7/8. It's obvious that the support our son's school has put in place is just not enough now.

Ds recognised the traits in himself following a presentation in assembly. At the time, i said wait and see - it wasn't impacting his day to day life, but if that changed and he agreed he wanted to seek diagnosis then we would act on that. So, here we are, we've paid our money and await the assessment (within 8 weeks).

We initially asked for him to be referred via NHS which school agreed to, but you're then put on a parenting classes waiting list (which is massively oversubscribed) to clear the first hurdle. And then by the time you get through all of that, you could be waiting until well into the GCSE years, which could be too late. I know how hard it is to just 'find' money for a private diagnosis, but I think i would honestly consider getting a small loan if we hadn't managed to find the money. The NHS is broken, it will be years before you get anywhere - particularly if your son is 'borderline' at the moment.

and agree to shared care.

This depends on the GP. Not all GPs will take on shared care. If affording ongoing private prescriptions would be an issue, it is wise to speak to your GP beforehand.

@Whatafustercluck
Thank you for sharing that. I emailed school and they're putting in the referral. Private just isn't an option for us atm. He's in independent school, which has just had the VAT increase and that's on top on DH being made redundant (no payout) last year. We are both freelance and our sectors are really tough so although we look super privileged from the outside we're pretty much living month to month and used up all our savings with periods of unemployment over the last ten months. If things improve we'll definitely explore that and see if we can find the extra. The School did warn us waiting lists were long for the NHS option. But said it that was ok as they'd support him in the meantime and I can tell from communication that they are doing that. I am confident that the school will push and support us where they can.

They have been brilliant to be be fair, which is why we'd be reluctant to pull him out even if it would drastically improve our financial situation I know that locally the schools aren't as good - local High School has had ten days teacher strike this month alone and we're well out of catchment for others.

You could look at Right To Choose.

@youwot I think you'll definitely get way more support from an independent school than state mainstream, which is where we are. We have another child who is on the autism diagnosis pathway, also in state mainstream. It's been a battle to get her needs acknowledged due to her masking her difficulties well at school and having no obvious learning difficulties. To be fair, her current (junior) school has been excellent and she's had fantastic teachers for two years now. That alone makes such a huge difference. Good luck.

@Whatafustercluck I think it depends on the school. There's some privates that aren't good if you don't fit a particular mold and equally I know of state schools that are excellent, glad you are experiencing that too. I think because in general private schools tend to have smaller class sizes and more staff resource it's sometimes easier for them to recognise issues early and support than it is state schools which are more squeezed on budgets and staff. We didn't necessarily want to go private and only looked at this school as a back up because we were limited with catchment as we're non religious and secular schools were massively oversubscribed so we were worried we'd get assigned a school miles away which actually ended up being the case.

I hope your children get the support they need. It sounds like an uphill battle for sure. All down to funding of course, I wish education and youth services were more of a priority and got the funding they needed.