Anyone else’s child doing exams without ADHD meds?

[Cluborange666]

Just wondering if my son’s situation is rare or common. He was on the waiting list since 2018 for diagnosis of autism and ADHD. In 2020, during lockdown a woman spoke to me on the phone (not him) and said that if he was on above average exam scores and had friends then he was fine. Case closed. We resubmitted our request for a diagnosis after DS got lower GCSEs than predicted and he had a bit of a breakdown that summer. He was prescribed sertraline (which really helped).

He got diagnosed with autism (plus autistic burnout) and ADHD (the quiet kind) at Christmas. He is in the lowest 4% for focus. He still hasn’t been given any meds due to the shortage and is now in the middle of his A level exams. There is no way he will achieve his full potential as his chosen career A level exams all take place in the afternoon with another exam in the morning. He just can’t focus for that long in one day.

We’ve contacted all the relevant people multiple times. We just get told he’s a “priority’ but obviously this has all had a massive impact on his life chances and his self esteem.

We are hoping he’ll get BBC in his exams but he honestly is extremely bright so this would not show his true potential. I don’t even know when he will get meds as no one in CAMHS returns our calls. As such, we haven’t applied to university for him as there is no point. He needs meds before he can continue and right now no one will tell us when that will be.

I was just wondering if anyone else is in his position - if it’s common or uncommon. It’s really hard on him.

From what I've seen, this is pretty common. BBC is enough to go to university. If he can't get into his preferred course, look and see if he can get a course with lower requirements and then switch after his first year.

But moreover, meds aren't magic. Improved focus from taking stimulants is useful (and is why so many undiagnosed people self medicate with caffeine and nicotine) but it's the long term coping strategies that will make the world of difference. People hope that if they just take a pill they'll be "normal" but everyone finds studying and exam taking a challenge and specific techniques can be developed to make it more manageable regardless of neurodiversity.

He is using ProPlus and says it helps. He revises well and gets As in the practice papers at home. His big issue is ‘zoning out’ in exam conditions and not getting them finished. Also he makes silly mistakes due to not focusing properly due to exhaustion.

I don’t think we expect the meds to cure everything but I’ve read enough people online saying that they were a game changer to still have hope.

Oh yes, I don't want to downplay them either — for intense make-or-break challenges like exams they can make all the difference. With titration they're not always instantly useful or without side effects but they can be a game changer.

If he can't get them, then you could look at scientifìcally proven herbal supplements that can be some help. Look up nootropics. Stuff like Alpha-GPC, Ginkgo Biloba, Rhodiola Rosea... not as effective as medicated stimulants, but might be worth investigating in their absence.

My DS is currently doing his GCSEs, he has ASD & ADHD and isn’t using any meds.

When DS was 8 we tried meds but it made some aspects of his ASD so much worse such as sensory issues and anxiety. He copes better without any meds.
I wouldn’t assume that the meds would be a magic wand for your DS.

Have you checked what exam adaptations he could get? For example, if he zones out during the exam and doesn't finish, he would perhaps be eligible to have a prompter, to remind him every so often to get back on task. Or maybe if he had breaks where he could get some physical movement, then he'd be able to come back and focus again.

If none of that is in place now, would there be any chance that he could wait and do the year again? Or if he does decide to go based on the grades that he gets this time, at least make sure that he has suitable arrangements for exams in place for university?

Thanks for the replies. He has a table tapper but the teacher apparently left half way through his first exam as she had somewhere to go (!) He said it helped.

I hope things go well for your son.

Why hasn't he got reasonable adjustments in his exams?

He should be getting extra time and rest breaks, with the option of a laptop, if needed.

I fear it is too late now, but contact his school/college and see if they will put anything in place!

Hi I’ve been in constant contact with the SENDCO. (He’s at a very reputable grammar school btw.) He got 25% extra time from his last school (private so quicker to give support), carried over but his new school wouldn’t give him anything without full diagnosis from the NHS. Now they say it’s too late. He isn’t even in the quiet exam room. The table tapper is all I could get for him.

What was his thought process about not applying to Uni?

My son did. He wasn't diagnosed until uni. AA B B. No reasonable adjustments either. Luckily he had that hyper focus that some have, so his results were always going to be great. He doesn't take meds now - they made some things harder for him and some easier. They are not always the answer.

So sorry to read this op, access to CAMHS and medication should obviously not be blocked in this way.

DS was not medicated for his GCSEs and but we went private for A level. I don’t think he’d consider university without medication as he finds independent study so difficult, medication has made a significant difference to him. He also has extra time and movement breaks.

i appreciate going private may not be an option but I understand the importance of accessing medication and learning support in order to achieve their academic potential.

Op I am an invigilator and it sounds like he needs a prompter. His A level invigilator should not be a teacher or leaving the exam room without someone taking over (we sometimes have to leave the exam room- me most recently because a student had a diabetic emergency).

Can you ask the SENCO and exams officer what Exam access arrangements he has? If none then can you talk to them about putting in a special consideration? if nothing has been done at all in the period of time he has been at the school then I think you need to explore further- quite robustly.

My daughter is diagnosed adhd and asd and doing her gcses, currently not taking meds we've tried methylphenidate and then elvanse (I'm on elvanse myself adhd) but she absolutely hated them, unfortunately they exasperated her asd and she was becoming depressed so decided it wasn't any good for her. Her paediatrician said unfortunately it was very common for those with a dual diagnosis to not cope with the medications for adhd and tbh they are brutal, I spend alot of my day on a roller coaster (medicated years now and it's never gotten any better) but in a catch 22 as I have 3 sen children 2 severe (not my daughter doing gcses) so I really have to be on the ball my medications help me prioritise and work out what jobs need to be done in what order but you absolutely know when they wear off and the more stressed out or hormonal you are the period of time they work for each day lessens hence the roller coaster. As they wear off each day you do become irritable, frustrated etc it was these effects my daughter struggled with most due to her asd and needing to feel grounded it really unbalanced her further she was quite upset about it as wanted a *cure. She now has cbt therapy and takes more downtime for herself,on her worst days she's prescribed propranolol for her anxiety she said this helps control her adhd side by slowing it down enough (her words) I hope your son finds something that works for him.

He feels burnt out through just getting through GCSEs and A levels. He’s spent those years masking (he got a bit bullied at school which is why he changed schools for sixth form as he got very depressed). He feels that he needs a break plus we want to wait until he gets the meds to see how we will progress.

He fully intends to go to university but I think he finds life really exhausting and difficult.

Sprinkles211, thank you for sharing your experience. I hope it all goes well for your DD.

What's their reasoning for 'nhs diagnosis'?

That's bullshit considering how long those take and disabled students allowance (part of sfe, a gov department) takes private diagnosis.

Personally I'd be demanding he has the necessary adjustments.

Reasonable adjustments for uni are much easier. So if he wants to go, he will be well cared for. I work in the field and we just take diagnostic report, as does DSA.

That’s good to know. Thank you.

The school is talking absolute rubbish.

A diagnosis is not required in order to get exam adjustments.

www.jcq.org.uk/exams-office/access-arrangements-and-special-consideration/

My daughter was diagnosed at 15 with ADHD and took meds in years 11, 12 and half of year 13.

She decided (much to my huge dismay) to stop taking her medication a month before her A levels! There was absolutely nothing I could do about it. She was immovable.

She ended up getting ABC in her A levels, having been predicted AAA, and missing out on her preferred university course by 1 grade.

She still got a place at her preferred university and has just finished her first year.

"His big issue is ‘zoning out’ in exam conditions and not getting them finished. Also he makes silly mistakes due to not focusing properly due to exhaustion. "

He can get exam accommodations for that. Such as extra time (to account for the time he loses focuses) and a prompter. A prompter can help to focus if he loses concentration for example or help him manage his time in the exam. He could also have supervised breaks (when the time stops) if he's getting exhausted and losing concentration that way. If he's easily distracted he could also ask to have the exam in a separate room if that would help.

https://www.communicate-ed.org.uk/assets/downloads/GuidelinesforrCandidatesEligibleeforAccesssArrangements2.pdf

What?!? That's not acceptable!