To medicate my 7 year old? Autism + ADHD

[Coachgirl]

He has a dual diagnosis of autism and ADHD. He's a smart, inquisitive and wonderful little boy who I and many others adore but he displays incredibly challenging behaviour which stems from chronic and ongoing overwhelm. It's like his autism and ADHD battle against the other. He fits the PDA profile of autism if that's relevant.

He lashes out physically, both to us and himself, screams and shouts and is very destructive. We've lost count of the amount of property he has smashed and damaged in the home. If he continues in this direction I fear he's going to end up in prison one day.

We've done absolutely everything we can possibly do. You name it, we've tried.

At a recent review with his paediatrician he has been perscribed methylphenidate. Two weeks ago I was adamant I wanted to give medication a go but now I'm dithering.

I'd appreciate some perspective. Do you think he's too young? Do you have any experience of neurodiverse children and medication like this?

My son has autism and ADHD and he's been on Methylphenidate for around 4 years (he's 14 now).

Medicating him was the best decision we ever made. He's gone from bottom of the class to the top and made lots of friends now that his behaviour is calmer (people used to avoid him as he could be impulsive and unpredictable). Do what feels right but don't feel guilty for using medication, some children need it.

go with the paediatrician's suggestion

Try, but allow for the fact that people with a combined diagnosis sometimes don’t get on with ADHD meds. I felt that the medication kicked away all the scaffolding that ADHD offered autism and I suddenly felt severely autistic and with no coping mechanisms. It was awful.

My AuDHD child has been on methylphenidate since age 6; he is now 22. My DH and I resisted the medication at first but decided to start it after my DS was expelled from his afterschool club because the staff refused to look after him. He was also under threat of expulsion from school in year 1 which I don’t think they would have actually been able to do, but certainly his teacher was not able to cope with his behaviour.

It took a while to get the formulation and dosage right but, when we did, there was a sea change at school and he was able to cope much better. I honestly don’t think he would have made it through school without medication. When he went to university he decided he didn’t need his meds any more but then really struggled with organisation and attending lectures. He has since started taking methylphenidate again and manages fine now.

One thing that I have noticed is that the ADHD meds eliminate his stimming which can otherwise be pretty disruptive and annoying.

The downsides of methylphenidate are having to be monitored frequently for blood pressure and DS definitely had a reduction in appetite - he was always very skinny as a child. When we stopped the medication over school holidays, he would eat a lot more so it can be important to have medication breaks. Methylphenidate has a very short half-life in the body so it shouldn’t make any difference if you skip a day or longer; it will work equally well once you start taking it again. (As opposed to something like antihistamines where you get more effect if you take them every day.) My DS had a couple of short periods where he needed melatonin tablets to help with sleep, particularly when he was on higher doses of methylphenidate during puberty. He was on 92 mg per day at one point; now he is stable on 36 mg per day. The formulation that works best for him is Concerta XL. Equasym would wear off too quickly and Xaggatin doesn’t seem as effective at the same dose. So it’s worth experimenting with formulations and timing to see what works best. Some children need a top up dose of instant release medication such as Medikinet if they have evening activities or homework. Some even need a top up dose at school - Equasym only got DS through to 2 p.m. but Concerta lasted until 4 p.m.

One thing to watch out for is rebound hyperactivity. They can get a bit silly and excitable when the medication wears off which is why my DS needed a top up at school at one point.

Btw I was v concerned about medicating my youngest. Diagnosed adhd and asd. I was worried the meds would increase their anxiety.
the psychiatrist explained his theory - the kid is so worried about forgetting something or blurting out the answer and generally trying to keep themselves under control that this was the cause of the anxiety. Therefore if we medicate - to deal with the impulsiveness, reduce hyperactivity and increase attention and focus - this would address their worries and thus reduce the anxiety, not increase it.

the medication has been life changing. For both kids.
yes there are side effects which others here mention. But when we weigh up the pros and cons we come out very much in favour of the medication. And the dr has suggestions for dealing with the difficulties (like rebound mania between 4pm and 7pm when the extended release meds wear off - take a small dose of the instant acting meds to smooth out the come down)

meds are best provided alongside adjustments at school - movement breaks, standing desk, sat in the right place, toilet buddy, more 1:1 time etc

executive function coaching (at school in a small group of 3) has been super helpful for my older child.

best of luck.

So easy to say if you’re not this child’s parents. Would you say the same if a child had type 1 diabetes and needed meds for life???

Try it

My children take medication for adhd and iv not regrets. They have all benefitted their academic life massively improved with mediation.

Its a bumpy road the first 6 months with side effects of headaches, stomach aches, wondering if your doing the right thingas they appear so calm. I worried they were a little zombie like but other people reasured me that it ws just they weren't as manic.

Now mine. Choose to take meds if they are going somehwere at the weekend where they need to be more focused.

I completely understand. We have the same dilemma for DD2. Am told that the medication reduces the ADHD symptoms, but can mean the ASD/AUD comes to the fore.

The medication also affects appetite - and DD2 is already too small/fails to eat, so I don’t dare try it yet.

BUT from what you’ve said - he’s not having a good time. He’s struggling with coping with the world and surely it’s best to give it a try. After 6 months you may decide it’s not for him - but you might be astounded by the change.

We dealt with wear off by doing exercise. Biking on a track, scooting, swimming

Try it. Its not a forever decision. If it doesnt work, stop.

We tried fluoxitine for anxiety, it was no good, we stopped (under supervision)

As it happens we then tried setraline a year later. He used it sucesfully for 4 years and now doesnt. If it did alter his brain forever, im bloody relieved as his life is much fuller and richer as a result..

Methylphenidate is a miracle drug for ADHD, but I have no experience of combined AUDHD/PDA. My DD struggled through primary school and got detention after detention when she started at secondary. She was diagnised with ADHD and started on meds in Year 8. It has been life changing, and she now a bright, confident 21 year old with a 1st class honours degree from a RG uni.

Thank you all so much for taking the time to respond, I've found these posts incredibly helpful. After much deliberation and talking through the pros and cons we are going to go ahead and start the medication on Monday.

With regards to autistic behaviours coming to the forefront when you treat the ADHD, this is something I've heard about and will be mindful of.

I've put some plans in place to navigate any change in appetite and meal schedules.

His (SEN) school is aware and onboard. I had a lengthy discussion with his teacher yesterday, they have first hand experience of ADHD and this medication aswell so he will be well supported there as he adjusts.

It's so encouraging reading such positive posts and how meds have improved your DC's lives so much.

I so hope that this time next year I'll be saying the same for DS. Nothing ventured and all that 🙂

I’d encourage you to be wary of anyone who gives advice without clarifying their experience, OP. People have a lot of opinions but If you haven’t lived it, you don’t know. My son (very similar profile by the sounds of it) has been on Medikinet since he was 6. Would I have chosen to medicate an infant school child with speed? Of course not. But we were out of options and took the advice of the paediatrician. I’m glad we did.

Our son is now 14 and still relies heavily on medication. To reframe it a bit, meds aren’t just about curbing unwanted behaviour in the moment. They quieten down the brain so the child can develop. When medicated, my son is able to receive and process information, communicate more effectively, manage a low level of demand and learn self regulation skills that help him navigate the world when unmedicated (which is a lot of the time - even the slow release and a top up will only see you through 8 hours of the day). When unmedicated he is almost entirely unreachable.

There is no harm in giving it a try. I hope it goes well for you and your child.

Story: my now-medicated-for-ADHD-high needs-autistic child had a nasty and scary seizure when he was a baby. We had to consent to give him a daily dose of a medication which might help stop the seizures that were severely damaging his developing brain, but more often than is comfortable results in the child permanently losing their full peripheral vision. Not gradually over time. Instantly and forever, at less than a year old.

This is the position from which a lot of parents of children with complex needs operate from. It rather changes your perspective on risk vs benefit. It also makes it very easy to spot when someone has read something on Instagram but has no idea what they’re talking about or how damaging it can be. It’s not helpful and not necessary.

I’ve found this thread really helpful too. My son is only on 10mg atm and prob needs to build up to 30mg given his weight (he is 99th centile for his age). We’ve seen no change in him after a week, but no adverse effects either. I’ve learned not to hope that any one thing will be a silver bullet so we wait and see.

This is utterly ridiculous

In some ways these medications are like calpol - the short acting versions wear off after four hours and it is NOT true that there are permanent effects.

Don't be afraid to give it a try. If it works it might be incredibly positive. If it doesn't work you can stop.

As a PP pointed out, the risks of not medicating also have to be weighed against the risks of medicating, which are extremely low when you're following a long tried-and-tested titration schedule starting at a low dose under medical supervision. In some ways the UK is even more cautious than some other places.

Ffs!! Are you also anti-vax? 🙄

To the person stating that medication “will change the child’s brain forever”: you do realise that near-constant anxiety, repeated surges in cortisol, social isolation, violent outbursts, lack of sleep and inability to focus are pretty disastrous for a child’s developing brain too, right?

I had a child just like that. 30 years ago, a locum Dr prescribed ritalin. I gave it to my daughter, and the difference was remarkable. She was able to sit still, able to do normal things like read a book, etc. She loved it, because she hated the way she was, and really wanted to be able to sit down and learn. Then, because her normal Dr came back and didn't believe in its use, he simply took her off it, even after her headmaster said she'd have to be expelled. She, and I, was distraught. A glimpse of her working to her full potential was snatched away.
I took her out of school. I discovered cranial osteopathy, and she started that. She was eventually (6 months) able to go back to a different school, and calmed down enough with prolonged treatment, to reach her potential.
She now has a law degree and is a borough council lawyer.
I can't see the sense of being given the means to let your child have a more normal, less stressful life, and not taking it 🤷🏻‍♀️

My daughter started Methylphenidate at 10 and it has been life changing.. She's gone from a y5 child who was regularly over whelmed in the classroom and becoming very disregulated and out of class pretty much daily to a confident young lady who has aced her first half term of mainstream secondary. She doesnt always take it when not at achoo but can explain herself that when she takes it she can concentrate on her work rather than "bugs and Wednesday".. which are what she is currently obsessed by..it also stops the physical adhd fidgeting type behaviours.

Waiting for @Cinnamon77 to come back with proof regarding their ridiculous comment.

Anyone who has never had to give their child medication beyond Calpol doesn't get how hard this is. Medications come with side effects, the first time I had to give my son anti seizure medication I almost had a breakdown, the side effects were rare but serious and I was actively giving him this medication that might harm him.

Same with giving my daughter steroids for her asthma.

Currently youngest gets lacrulose for constipation and eldest gets melatonin for sleep and I still hate it but I give it because both things make their life better.

Op my 7 yr old sounds very similar to yours and I swither just as you're doing. Melatonin made a huge difference for us as sleeplessness is a big trigger for my son. First few days were scary then it was life changing.

I'm just sending a virtual hand hold for whatever you decide to do. I've been there and it's hard and you'll work it out.

I don't know if I read some research on this but I think taking it in childhood can help it become less severe. Maybe worth looking that up.

I know that children with adhd hear many more negative messages as they grow up.

I'm late diagnosed in my 30s and honestly from you describing the impacts its having, I think that's your answer- its worth a try, no guarantee he'll get on with them but could help.

You will still need to learn strategies (because adhd won't disappear as an adult) but easier to do that from a medicated perspective and early on. And you don't have to take it every day, can have days off.

What is your qualification to make this statement?