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?

You’re not unreasonable to consider it. But don’t be too disappointed if it makes his autism related behaviours worse. My DS has inattentive-type ADHD and has really benefited from medication. However, several of his friends have autism alongside ADHD and their parents have found that the meds suppress the ADHD symptoms, and this brings out the autism symptoms more.

My son is not dissimilar and also has an AuDHD diagnosis. He’s been suspended from school 6 times this term. We’ve just started on the lowest dose of Medikinet XL. We have tried so many things - moving school, therapy, natural supplements, changing diet, adding more exercise. Medication felt like the last thing we hadn’t yet tried. Like you I never thought I’d be doing it.
He doesn’t like getting so dysregulated that he can’t control himself. He doesn’t like hurting people. He asks despairingly why he has this temper. He’s desperate to have friends, but other kids are understandably wary of him. If medication can help him be happier, find a place in the world for himself, then I will be glad of it.

My PDA/ADHD DS started on a low dose of short acting ritalin at age 8, after years of extreme hehaviours. It was amazing for us, he was already out of school, so there was no change there, but I remember taking him to the local art gallery on the tram about a week into medication, and I couldn't believe it. He was able to walk next to me, manage the tram without incident and enjoy the gallery and cafe with me without incident. It was amazing, and I felt for a couple of hours I had an 'ordinary' parenting experience, and he was able to be a 'regular kid'. A few years down the track, and he is still relatively lightly medicated, and has developed additional strategies to manage dysregulation. I think medication has been the key to his progress, because without it, he was in a state of crisis, and unable to learn.

We started on a different med before the methylphenidate, which was horrific. This meant that when we got to the ritalin, the paed was extremely conservative with the starting dose.

I would never be in a rush to medicate a child, but I also wouldn’t hesitate to do it when there really is clear need. I know medicating a child so young feels scary. But I think the prospect of what the future may bring if you can’t help him regulate is also scary. You’re dealing with a very challenging situation, and how ever difficult you are finding it I’m pretty sure it’s more difficult for him. He’s suffering. You’re suffering. I think it sounds like it’s time to give medication a go. You’re not committing him to a lifetime on drugs. As he brain develops his needs will change and he may be able to cope better.

It's never a good idea to medicate a child. It will change the child's brain forever. The effects are not reversible.

I'm so sorry, it must be so difficult for you

I think if it could make life easier for him then you should try it. My adult son is severely autistic and recently after a crisis admission to an ATU, he was prescribed sertraline and it's made a huge difference. He is happier, calmer and his challenging and obsessive behaviours are greatly reduced. He is doing many activities now that just wouldn't have been possible a year ago. I was always quite anti-medication but if it can make life less anxious and stressful for him, I think it's worth a try.

Please share the research citations for this assertion.

My daughter has the same diagnosis and has been on Medikinet since Year 4. It definitely helps her.

Ridiculous comment.

Yes some citations would be useful for this ridiculous statement.

We medicated from even younger and I have zero regrets. It made life for them so much easier.

My son is combined aswell and medication was the best thing for him he started age 10. We had a rough puberty phase with him it terrified me that one day he'd have an outburst that went too far with the wrong person and I'd either bury him or see him in prison. It broke my heart. We fought for a school for boys like him, the same for post 16 and hand on heart he has just turned 21 and although still needs a lot of support he is now a lot better then he was and works full time. We were lucky his school pushed for F-CAMHS to get involved and we had the most through top to toe inside out tests and investigations you could think of and learnt more about what is exactly going on in his brain. It actually revealed infarcts that were in places that were affecting his ability to retain information, regulation himself and struggle to see fact from fiction. This knowledge saved his life and probably mine as it helped advocate for him. When we asked him how he felt on his medicine vs without it, he said his medicine helped his head feel less busy. And when we had a meds shortage post covid we fought with the mental health team to get him a new medicine as he crumbled without it. He sobbed like a newborn. He's now been on elvanse 54mg for a little over a year and held down his first full time job since February working on the recycle trucks 5am-3pm 5 days a week.

It truly was life changing for not just him but our household. It's not a magic remedy but it certainly helps tame some aspects whilst allowing us to rinse and repeat everything we try and teach daily.

I felt like a failure when he first went on it, but we gave him the option of trying and I'm so glad we did. His previous behaviours escalated so crisis point endangering not just himself but others.

Good luck op.

My son is slightly older with an autism and ADHD diagnosis. We found the stimulant medications made his anxiety much worse, but have had success with Guanfacine. I had concerns before trialling them but actually it has made his life easier for him.

I wish you well OP. My child was on Aripiprazole for years and then Methylphenidate, plus Mirtixapine. To everyone who thinks you shouldn't drug a child, would you prefer for them to be sectioned

I work day to day with people with autism and have attended many medication reviews in a care capacity. Sometimes it takes a while to get the right medication at the right dose but it is a true lifeline enabling people to live full and meaningful lives where otherwise anxiety and heightened behaviours result in isolation from peers, education and the community.

That is not a bad thing. It's impossible to live with a destructive child and it's not good for the child to be in this state either.

It's so worrying that you would consider denying your son medication that could dramatically improve his quality of life and outcomes.

I would follow the advice of the paediatrician.

Similar story to other posters on here. Had ASD/ADHD diagnosis for my son at 5 years old. At first we left medication but his behaviours were having a really bad impact on us as a family despite us trying to help him manage things (we did our best, honest!). He is now coming up for 10 years old now and taking Medikinet XL 15mg for the last couple of years. We chose this mainly so he could get through a school day and we were wary/guilty about having to resort to this. Life has been significantly better for him as he is able to manage days out, social events and a lot of the other things that we tend to take for granted with neuro typical kids.

Also, use of these meds should be very well monitored and has been with us. We have a 6 monthly check up with BP, weight of height and full discussion about our son's health. If you choose to use meds you should be well supported and guided in their use.

Best of luck whatever you choose.

It's a big decision though, I know we were initially very reluctant. It's only right to consider it from every angle.

Things that happened when we started our DC (diagnoses of ADHD and autism with PDA profile) on methylphenidate at age 6:

He started sleeping through the night properly for the first time as his mind and body were finally able to rest

His frustration tolerance improved a lot

It became easier for him to leave the house

He struggled less with baths, showers, toothbrushing

He started excelling at maths - school had previously considered him severely dyscalculic

It’s not a magic bullet - he has a crash when the meds wear off, and he’s still PDA and very resistant to lots of things, and he still needs constant undivided attention - but most of the meltdown behaviour (breaking things, slamming doors, biting and hitting himself) have stopped completely.

Best thing we did for both my kids. In fact I wish we had started earlier with our oldest.
His self esteem is shot to pieces.

It is a well known tried and tested treatment. With loads of clinical data. It is not a magic wand. But it definitely helps. Especially with school.

try it for the next 6-12 months and see where you get to.

Same profile as yours and mine is 9. He was doing great on methylphenidate, at first. We're back in crisis mode and have had to stop the medication. It has made his pda show up so much more! We have a medication review on Monday, as he's only been on it a couple of months. He was prescribed 10mg.

Our paediatrician did say that it could have this effect, as my son is on the extreme side of the pda profile and we're back to horrific meltdowns and I've had to call the crisis team multiple times this week due to his mental health.

We only stopped the medication this week but his behaviour has been escalating for the past few weeks.

I was really keen to try him on it initially as I'm on the same medication but adult dose and it's saved my life but it's not been the game changer I thought it would be

I would not hesitate to medicate.

I have 2 sons with AuDHD (no PDA profile). For my youngest, medication is essential. He would not be able to function or attend school without it. He’s 12 and is on 50mg Elvanse. CAMHS have been amazing (I know how often it’s slated but honestly, my local CAMHS have been fab).

Of course there are side effects, as there are with any medication. It’s also not a one size fits all. My personal opinion is that you wouldn’t withhold (for example) asthma medication so why would you not give ADHD meds?

I do understand your hesitation though, I felt the same way - it just felt like such a big thing to do but honestly, ADHD meds have transformed my children’s lives.

Sending you and your son all the very best.

I think you should give it to him.
IF it doesn’t work you can always switch medications.

It has been truly life changing for us- I was initially hesitant as I felt we were managing ok but then puberty came along and we had no other choice. Now I wish we had started them earlier- my child is so much happier and productive on them- low dose only of methylphenidate- some days has an emotional crash when meds wear off but compared to the daily meltdowns and violent behaviour this is much more manageable. My child was just on expectations academically before medication- now in high school and top set for most lessons and has really helped with anxiety too. I think it helps to hear from other parents- don’t let people guilt trip you that you should have already started them- I’m a medical professional myself and didn’t initially agree to them as it didn’t feel the right time and I was worried about the side effects- however I shouldn’t have worried as minimal side effects-reduced appetite in the 8 hour window I would say- so my child has breakfast then when home from school doesn’t stop eating so more than makes up for it and doesn’t miss meal just has lunch and dinner later.