Advice/experience with ADHD medication for child with dual diagnosis of ASD/ADHD

[Cupcake07]

Does anybody have experience of using ADHD medication for a child with a dual diagnosis of AS and ADHD? (parent, family member, somebody who works with children with additional needs).

If so can you tell me what experience you have? What changes good, bad or otherwise did you see in the child? Side effects and so on.

Or if you have taken the medication yourself, how did you get on with it?

I have friends who have children with ADHD on it's own and have heard a fair bit about their experiences, but I am interested in the dual diagnosis and how it is affected by medication.

Thanks

My DS3 is having the ADOS assessment soon and already has a diagnosis of ADHD and is medicated for it. We were refused the assessment initially as his paediatrician wanted to see if his communication issues were because of the ADHD.

She told me that either his communication issues would lessen or become more obvious, obviously in our case the latter happened hence the ADOS. It's almost like the fact that he's less excitable gives him more time to think and therefor it's easier to see the dis-function in his thought processes.

DS2 had some social issues before he was medicated for ADHD and these have lessened considerably.

Ds has dual dx - AS age 7 and ADHD at 10. He's now 14 and has been on medication since age 11.

It's hard to tell how much difference the medication alone has made as we removed him from school to home educate shortly before he got the ADHD dx. It's obvious that a lot of his behavioural improvement is due to the removal of stress he was constantly under while at school but it's not all of it - we delayed medicating for a year after dx in the hope that it wouldn't be necessary without the school pressure but we did agree to a trial in the end.

Ds started on 3 x 5mg immediate-release methylphenidate (Ritalin) and after a couple of weeks to be sure of no side effects (he briefly found it hard to get to sleep but that soon passed) it was increased very gradually until we found a dosage that suited. We also introduced atomoxetine (Strattera) which is a once a day medication. He currently takes 35mg methylphenidate (over three doses) and 40mg atomoxetine daily. At one point he tried slow-release methylphenidate but it didn't agree with him (it was as though he was unmedicated) and we went back to the original drug.

It's not a miracle cure - the symptoms are still there and he will always have ADHD, but it is more manageable now and he is able to function far better with the medication than without. He is able to study for GCSEs and has taken some exams, but he is still quite disorganised, forgetful, and easily confused. But again, it's difficult to tell how much of that is ADHD and how much is hormonal. He still needs a fair amount of support to keep him on track.

With dual dx, some people comment that while the ADHD medication can calm those symptoms, it can make the autistic traits seem more obvious. I can't say that this has been an issue for ds - in fact his autism seems far less prominent now - but it's worth considering.

In practice, the only way to tell how ADHD medication affects an individual is to try it and see. Any reasonable psychiatrist would be willing to discuss specific concerns and advise accordingly.

Thanks for your advice, I had hoped more people might have got back to me, as a friend said this was a really good way to get advice, for my son, and it's the first time I have been on here.
Really good to get some information to go on, thanks again.

Sorry you haven't had more response! I think it's a bit quiet here cos loads of people are away/busy/in therapy over the holidays.
I have no experience to help you yet, just a ds (7) with an ASD/PDA diagnosis and now undergoing assessment for ADHD as well. From what Camhs says it seems the ADHD is highly likely and we will start on meds at the end of this month- Methylphenidate.
I'm hoping it will help cos we are pretty desperate right now! I guess the thing is every child and the specificities of their condition are so variable that you only know for sure when you try it- fingers crossed!

Pop is right - it's always quieter on here in the holidays. Keep asking and I'm sure people will come along when the kids return to school.

DS1(9) has a dual diagnosis and has been taking atomoxetine for 3 years, now.

It's helped him a lot. I have no idea how we kept it together before he started on it because he couldn't focus on anything (except the computer!) and even struggled to play productively. Taking it has made a massive difference to his executive function and to his ability to communicate - the downside to that is that, instead of screaming when he's upset about something, he can rant for England, but I'd rather have it like that. He couldn't even tell us if he was in pain before.

Prior to taking atomoxetine, evenings were a real nightmare. He'd pinball around the room. Being physically tired actually made that worse and a weighted blanket made very little difference. He would take a long time to settle to sleep, too - we had to put DS2 to sleep downstairs and carry him up once DS1 was finally quiet. He's prone to extreme anxiety and angry, destructive outbursts arising from that, plus he's also prone to losing his appetite. We felt that methylphenidate would be a poor choice for him and his psychiatrist actually agreed, hence starting straight onto atomoxetine, which is normally only tried when methylphenidate in its various formulations has failed.

And i have no idea how I missed this thread, so sorry it's taken me so long to reply!

Ouryve, can you tell me why did you think methylphenidate wouldn't be right for yor ds?

My ds has a dx of ASD/ADHD and has been on fluoxetine for the last 6 months.. For me personally his ASD was always the harder of the two dx and it's been a miracle.. He tries new foods, much less anxiety with no noticeable side effects.. Only thing I would say is that with the ASD/anxiety under more control the ADHD appears to be more 'obvious' and we are currently debating whether to treat it or not

Agree with Ourye choice of meds. Very good for dual diagnosis.

DD (7) was dx'd Asp and ADHD April 12, and went onto Concerta almost immediately. We've found a huge difference, in that it also helped her to function normally and take a millisecond to think before responding to things. She was reasonably high functioning, but there was a huge difference once meds kicked in.

She has matured HUGELY in the past year, especially the last 3-4 months. It allows her to concentrate on the discussions we have, so we are slowly working on improving her emotional side. While we've a long way to go yet, I have been really proud of the way she has reacted to things at a number of different family and wider events since Easter.

We are looking at this as a short term issue - we are not intending that DD is on the meds for life but giving her a respite from part of her difficulties to allow her to learn some of the tools to deal with other parts of her Dx. She MAY end up on them for life, but we hope not and we are under constant monitoring, with our aim being to reduce or remove them in time. In the meantime, it means that she is coping with everyday life - school, a couple of sports, family life, keeping a few good friends, etc. And we are able to reason with her, and help teach her the coping skills she needs.

The things I mentioned in the second paragraph.

He already suffers with anxiety, arising from his ASD and methylphenidate is known to increase anxiety.
He already has issues with appetite and atomoxetine is less of an appetite suppressant than methylphenidate can be.
And evenings were already a babbling, bouncing nightmare, without experiencing the come down from a stimulant. Atomoxetine initially improved his ability to settle to sleep. The chances are that methylphenidate would have made it harder for it to sleep.

Does anyone has experience of Concerta loosing its effectiveness and what to do next?

DD was on 54 mg and moved on to 63mg. It made some difference, but I feel its not working properly. A few year ago when we started medicating ADHD, there was a day and night difference when she took the tablet. Her hyperactivity was gone and AS treats were becoming more obvious. The primary school teacher was commenting that Dd was like a zombie, but that was AS of course. Now, 5 years later, the school complains about Dd lack of focus even after the dose was increased. I think Concerta is no longer working and it shows in dd's speech. She wouldn't stop talking. It's quite intolerable really, like being in an Eddy Murphy movie 24/7 for 6 weeks :)) Would be good to get some of that zombiness back at least for her studies, it is a GCSE year. Fortunately DD doesn't have anxiety.

We have a follow-up appointment with the Psychiatrist prescribing Concerta. What would make CAMHS to move from 100% Concerta to something else?

Really interesting thread. My DS is 7.5 and was diagnosed with autism aged 3.5. From then he went to specialist nursery and special school up until last July when he left and joined our mainstream school with 1:1 support on an ABA based programme. He was diagnosed with ADHD last May, 2 months before he left the SS. The ADHD looking back had been very obvious but because he had autism the school had put things like his loudness, inability to concentrate and comply and not fidget down to autism. I was actually fuming with the SS as they were so adamant that he didn't have ADHD that they refused a Connor's questionnaire. We then saw an excellent local psychiatrist who specialises in ADHD who after 5 minutes looked at me and said if that child doesn't have ADHD I'm a banana! So DS has severe combined type ADHD and was prescribed methylphenidate (short acting Ritalin), currently on 55mg a day which is high for a child of his age. However, without it he is wild. He doesn't take it til 8am and is up at 5.30am and will shout and throw things etc. once he has taken it he Calms down and suddenly will co operate with getting dressed etc. He has managed to transition to mainstream with very intense support successfully, at the SS they thought I was deluded to even try and transfer him but the meds make all the difference to him being able to be there. He is still autistic but I now feel that when the meds take his ADHD away, it is evident that ADHD is his primary problem. However he can get anxious when on the meds and an autistic trigger can set him off, such as he could overreact to something not happening at the right time (he is obsessed with time and times things to the second!). Overall he is still very hard work even with meds but without meds it is like talking to a brick wall as he literally can not listen to you. The meds have given him a window of opportunity in which to learn and we have seen that in things such as he was writing at school within a month of starting meds, having been unable to concentrate before. He also says he feels calmer when he takes the tablets and he likes to be calm :)

I should add that the anxiety is not necessarily much worse after methylphenidate , it was there anyway before meds. For us, he is so hyperactive without meds that he is totally unmanageable and school too had to send him home when on long acting meds as they just didn't work for him. The way I see it is that the health risks of medicating him are far lower than the overall developmental risk of not medicating him because at least with the meds it gives him a window of opportunity to learn. He does have to take them 4 times a day and there are definite peaks and troughs as the tablets last about 3 hours at a time and you can see his behaviour become more hyper as they wear off.

With regard to effect of ADHD meds on my Ds's autism it helps that as well because without the meds it is very difficult to get him to concentrate so doing ABA or other behavioural therapy is dependent on him being medicated and if we can do the ABA it helps his autism improve too. For that reason, I tend to view ADHD As the most important part of the diagnosis to medicate because unless we treat that nothing else is possible but my DS is very severe ADHD hence why he is on 55mg a day Ritalin

My son has send he us 8 now and has been on medication from the age of 5 he has been taking ritlalin for about a year after having been on 5 different tablets which did not agree with him . He is now for the past year been on 20mg Ritalin which worked well at start, but the past few months does not seem to be working as well, he has app with his doc today so do not know what will happen hopefully will get him sorted

Vanilla - the way the dose is given across the day might need to be tweaked before completely giving up. I hope you find a solution.

Toffee the dose can need to go up with age, my DS has gone up by about 20mg this year

We've adjusted ds's dosages several times in the four years he's been taking medication, as well as altering the type of drugs he's on. Puberty is an interesting time as hormonal changes can affect how the meds work. Sometimes you have to fiddle about a bit until you get a combination that fits.

Yeah - DS1 has had a massive growth spurt, this year and we've been fiddling with his dose of atomoxetine. It was quite alarming when he grew out of his previous dose, as the return of symptoms and behaviours was so abrupt. Having his ultra bouncy 5 year old self back in his big 9 year old body was quite intimidating.

DD takes 63 mg Concerta XL, which is methylphenidate slow release. It seems a combination of methylphenidate and Strattera works well, right streaky? Is the implication that one have to move from slow release to basic "fast" Ritalin in combination with Strattera?
What is the threshold when they move to Strattera? I know it is 3 times more expensive, so the NHS would not be in a hurry to switch...

It works well for ds, but that doesn't necessarily mean it's right for everyone. Ds tried slow release methylphenidate but it didn't suit - it was as though he wasn't medicated at all - so we went back to immediate release which is better for him. Atomoxetine (Strattera) was always an option to consider from the outset, with the aim of switching to it without methylphenidate if the benefits could be optimised. That may yet happen but for now he's still on 40mg Atomoxetine daily and 35mg methylphenidate (15/15/5).

I'm not sure about thresholds but his medication is prescribed by a private consultant and the GP just prints the prescriptions on repeat. The consultant isn't concerned about cost - his recommendation is what is best for ds at the present time and the GP has to follow that advice.

Actually, I think part of the problem with prescribing ADHD drugs (and Ritalin in particular) is a tendency to generalise dosages instead of tailoring them to individuals' needs. I've heard of so many children being started on 10mg methylphenidate and that can be too much to begin with (ds started on 5mg) - if there are side effects (which is likely from too high a dose) then it's discontinued as unsuitable but the drug itself might be ideal for the child, just not so much of it.

DD was titrated to 10mg Ritalin very slowly from 2.5 mg. The only issue was the roller coaster between doses - it was too volatile, hence DD was moved to slow release. Now DD is so tall and weights 70 kg, that perhaps it's time to move on to another drug

Ah that's good, you have a sensible consultant by the sounds of things! Yes, I'd say it's worth having another discussion about alternatives. I expect hormones will be playing a part and exam stress could well add to difficulties. Makes sense to plan ahead.