Teen refusing ADHD meds

[apwilson1980]

Hi all, just looking for a bit of advice. My son, 16, is diagnosed with both ASD and ADHD, very verbal and independent but difficult to manage sometimes (also diagnosed with Tourette's and oppositional-defiant subtype etc).

He has been taking ADHD meds for a few years now (Medikinet XL) but has recently resisted taking them. He has begun saying that he doesn't 'feel like himself' when he takes them and that he likes being loud and crazy, etc. This has developed right in the middle of GCSEs (lovely) and we've managed to convince him to at least take medication on the days where he is sitting exams but I think that negotiation tactic is now creating a situation where he will think he doesn't need to ever take them (once he finishes exams next week).

I'm torn because I want him to be independent and have responsibility for himself as he gets older, etc., and believe his opinions need to be taken into account of course. But it's also very clear to everyone around him that he is much better able to manage himself when he takes the medication. It can be quite stressful for his younger sibling, me and partner, and even neighbours (!) when he is without it there is so much impulsivity, loud noises and banging, fighting and yelling, with the ASD difficulties in communication and general obliviousness to all around him certainly not helping. He's just not motivated in teh normal ways (likely due to ASD) by others' concerns, or the social stigma that being 'loud and crazy' might entail, academic achievement, etc and yet he's a very bright boy who can do really well when he can manage himself and so it seems absurd not to encourage that. I'll probably only get one shot at discussing with him, because he strongly dislikes long conversations, especially on anything complex, etc.

Has anyone dealt with this, when an older child refuses to take meds and this would seem to be to their detriment?

Have some similar isssues, with a slightly young teen, OP, and I know what you mean about one shot conversations,

Personally, I think it is important they never feel 'unacceptable' unmedicated (however challenging that state actually is), and if they have capacity, then their choices should prevail. But getting that to be an informed choice is the really tricky bit?

In your shoes I'd be booking an urgent meds review for him to checkout with the prescriber if there are more suitable meds/routines to try that don't create such a sharp sense of being different from one's core self? Perhaps the prescriber could also have a conversation in the round with DS about benefits/disbenefits of medication which might help inform DS's choices?

Perhaps there are books and youtube content from people with ADHD that would be helpful?

I've backed off with DS, as the harder I push, the more they resist. At the moment DS does a week days on, weekends off, and that works (I am blessed with (so far) understanding neighbours).

Sorry, don't know why part of the text appears crossed out -- that was a mistake!

Thanks MrsLamb, I like the way you put it, making sure they don't feel 'unacceptable' in any state, which is absolutely right. And, yes, we get same reaction of absolute avoidance of anything we even hint at 'pushing' for, so we have to be very careful.

The thought of YouTubers discussing is one I haven't thought of; we occasionally will send each other TikTok/Insta posts and it can be a good, more indirect, way of talking about things that works for him.

Speaking to Dr again is a good idea in theory but frankly, child hates the Dr so we avoid except where necessary. I keep hoping this will improve as they get older and get more perspective, etc.

And neighbours are very kind, actually didn't mean to imply otherwise!they just have a baby and sometimes the level of noise we create is just not normal!

At that age I don't think he can be forced or should be pressurised into taking them. Although of course you want the best for him. It is important to know that you have autonomy over your own body. If taking them is seriously affecting his sense of self, then the medication, or at least his mindset around them, just isn't working for him anymore.

Do you think you could talk to him about having a medication review to try changing the dosage or medication, explaining that could help reduce the "not feeling self" part? There are several available for ADHD and the side effects can differ and they don't all affect individuals the same. XL is extended release so maybe a shorter acting medication could be more suitable for him if he doesn't like the feeling of being on medication day-long? I understand that you said he has trouble communicating so I don't know if it is a helpful suggestion but maybe you could try asking him about if he has any strategies in mind for how he would deal concentration and motivation issues without medication, if he would be want to be referred for CBT or acres any other tools to develop strategies to better handle this without the medication?

It is also possible that if he does take a medication break he might decide that he wants to return to the medication if he starts struggle without it.

I personally take Xaggitin XL and do take short breaks sometimes but I always go back on them as my executive function is not great without them. I do it mainly to avoid tolerance but to be honest there is a lot of stigma around ADHD medication and it making you into "a zombie", which it absolutely doesn't if you are dosed correctly, so I do relate a bit to your son's concerns about not being himself.

It sounds like a really difficult situation to be it and you sound like a really supportive mum. I hope it all works out!

Thanks, it's really helpful to hear your perspective. He absolutely refuses any talk of CBT or other help, but the thought of shorter-acting medication is something to keep in mind if I decide to pursue the doctor review route; perhaps that could appeal to him.

Can I just ask what you meant about the zombie feeling -- have you experienced this and you think it is quite a real concern or you mean that there's false information out there about this? I think his dosing is correct in that we tried it, adjusted it, etc. but is this actually quite common?

also always worth considering re-titrating with a different type of meds and giving him agency, maybe he mostly crave control and agency over this.

Otherwise I don't have that experience, but sixth form is such a different experience and a step up, that they will probably find it hard so may not have any choice but accept all the available help, including meds.

I guess what I am trying to say, is perhaps let him have his way now (I know you'll feel like murdering him !) but possibly life will become so difficult that he will naturally reconsider, this is as long you don't feel he will do anything risky for himself or others.