ASD/ADHD Do not know what to do for best - medicate or carry on?

[antarctictoc]

DC10 has a diagnosis - high functioning autism (unable to focus so not highly academic) and mild ADHD inattentive type without hyperactivity. He enjoys sport and the practical lessons.

He tolerates school - does not really like it and has some trouble making good friends but is friendly with a couple of boys. He has poor impulse control so sometimes behaves in a silly way (calling out in class or acting the clown). It's not very often but enough to alienate himself from a lot of his classmates.

He struggles academically - bright but his inability to focus means he rarely shows his true ability.

Psychiatrist wrote his report and ASD/ADHD diagnosis and we had a phone call to ask questions.

We asked about trialling medication to help with focus and came away feeling psych was against medicating - recommended reading up on methylphenidate which he referred to as amphetamine.

We have read and researched and see there are possible side effects but also worry we are not doing the right thing if we don't try it.

Our child is struggling with school work and socially. Much of the time seems stressed and anxious. Self confidence affected too. We have tried counselling, one to one tuition, extra support in school (sat at front of class, one to one help, lots of positive reinforcement) but feel his inability to focus is very much a hindrance in so many areas of his life.

Has anyone else struggled with this decision and felt psychiatrist was not supportive of medicating?

I think at 10 if it’s impeding his ability to engage in academic work and relationships and your child is trying and has all the reasonable accommodations at school already it might be helpful to trial. Methylphenidate is the first line recommended treatment in children in terms of clinical guidelines and comes in different preparations but there are other stimulant and non stimulant options as well. Methylphenidate over time has done positive effects on emotional regulation in the context of adhd as well. Does your psychiatrist work in a neurodevelopmental service? Would a second opinion be helpful?

Apologies I wrote that like I talk (without commas).

thank you for sharing your experiences @Risslan . We're feeling wobbly about this decision because we feel unsupported by psychiatrist. Just a feeling we came away with after discussing. I am sure my feelings are playing into this too - but the reasons motivating us are DC is not enjoying life as he could or should if he was able to focus on his social interactions, learning, sports, everything really.

3 adhd dc, one with asd (possibly 2 but didn't see point in pursuing another dual diagnosis).
Medication all the way. My are all on methylphenidate.

Eldest went from bottom of his class to top of his class when he started at 7.

@Anothermother3 Yes, psychiatrist specialises in neurodevelopmental - and report mentions emotional regulation - concerned this will worsen with hormonal changes in puberty.

I do think there's no harm in trying if you're willing. The first medication we were given was only supposed to last 6 hours so you could try at a weekend and keep a close eye on him in a familiar situation and see how it goes.

It's strange they're not supporting you in meds though. We felt very much pushed in that direction, in fact the school refused to refer for adhd when we said we weren't sure we'd medicate!

How was the adhd diagnosed? My DS had a QT test so we can genuinely see measurements of concentration compared to other kids and he was 99th percentile. I think many are diagnosed by questionnaires so really hard to tell how 'bad' they are.

• QB test

www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/treatment/
These are drugs but they also have brand names
Mehtyphenidate - ritalin, concerta, delmosart etc

I have ADHD, was diagnosed at 17, took methylphenidate, and it was the best thing I ever did. I only took it for a year or so, but it really did help me rewire my brain, in a way. I'm still scatty and struggle with executive function, but my emotional balance became WAY better, and I learned what being "normal" was like. Plus I improved by a whole grade!

@antarctictoc medication options for ADHD are wider than methylphenidate/Ritalin. The info you’ve been given here isn’t quite right, as methylphenidate is not amphetamine.

Methylphenidate is usually the first line medication option, particularly for children with ADHD, and is often better tolerated by children than adults, and it’s also one of the cheaper options. It is one of a class of drugs called central nervous system stimulants, and does not contain amphetamine. Methylphenidate can come in immediate release or timed release form (brand names such as Concerta, Medikinet) There are other stimulants that do contain amphetamine, such as Elvanse (lisdexamfetamine, which has been modified for timed release) and Dextroamphetamine (immediate release). In my experience, adults tolerate the amphetamine based medications better.

Other options for ADHD medication may include non-stimulants, such as Atomoxetine (Strattera) and guanfacine, if your child does not tolerate stimulants. Guanfacine is often used for children with both autism and ADHD where there are co-occurring issues with anxiety.

Hope that helps understand the options better :)

Id say meds have been incredibly useful for my asd son. He has extremely poor impulse control without them which is not a good thing in high school when there are so many kids messing about or doing things they shouldn't.
Expect them not to eat much during the day. So heavy calorie breakfast and dinner then supper before bed to get calories in.

School are able to manage and support occasional impulse behaviours - he is not in trouble every day at school. It's his focus and social interactions, academic work that is hindered. School do not seem concerned about academics because he is working within ability range of the year group albeit very near the bottom.

Diagnosis did include a QB Check which I think is the same as a QT test. We were not given results - report says 'results consistent wit diagnosis of ADHD'.

Thank you @RavenclawsPrincess . Now worried our psychiatrist kept referring to methylphenidate as an amphetamine.

DD was diagnosed with autism aged 8 and then ADHD at 11. She has struggled with emotional regulation, attention, anxiety and focus ( on things she is not interested in) all her life. She started on ritalin and now takes medikinet XL every school day morning and a smaller dose at lunch. She is 16 and in 6th form. Doing her A levels. She led the decision to medicate we were unsure but it was the right decision. There are some issues with appetite but she has a real drive to do well at school so being unable to focus really distressed her. She did really well in her GCSEs and without the meds she would have struggled.

An interesting point to note is that the affect the stimulants have on an ADHD brain are different to a non ADHD brain. So either they work and it is right or they don't. DD only takes them when she needs to and takes breaks at weekends over holidays. It works for her.

This last point resonates, thank you

I resisted adhd meds for a long time. The moment I realised I had no other options she was a changed child overnight. She says she feels like a totally different person, like the clouds have lifted. She's on minimum dose and she's 10.

My ds has asd and adhd..

He is medicated from end of year 5.. i noticed he was happier as more able to stay in the moment. ,academically more able to focus, massive improvement.

He says doesn't get in as much trouble.

This all sounds positive and what I want for my dd. Can I ask how you managed to get your child medication ? Was it the GP route. ?

Your son sounds exactly like mine!

My son (age 11) is a different child now he's taking Concerta.

Like your son he is very bright but unable to concentrate.

He's so much happier now he's on medication and we really notice when he doesn't take it and he's gone from being at the bottom of the class (despite being clearly very intelligent) to the top.

We had to go through a few different medications to find one that suited him but we are very happy we decided to try medication.

We don't have any medication prescribed as yet. If we go ahead we need to do a few things first. Explain to DC and ask if he wants to try medication. At his age he will need to be on board with this.

Inform school, inform GP. We have not shared the diagnosis yet, only just received it.

Go back to psychiatrist for health check prior to prescribing. I don't think it's a straight forward process from here.

That's the thing with ADHD, the central nervous system stimulants don't affect somebody with it in the same way they do everybody else.

I know so many kids who you can tell as soon as they explode into a room sideways that they haven't taken their medication yet (we keep secure spares at work for those children - a quick call home to doublecheck whether they've taken it later than usually would or have forgotten altogether and then, when the parent inevitably says 'Hang on, I'll check - (sigh) no, it's still on the kitchen counter' and within a very short time, they're back to being able to learn and enjoy their day again.

Most take methylphenidate, a small number take lisdexamfetamine because methylphenidate didn't work well for them - and another smaller number whose parents have chosen to take the non medication path who really do struggle, particularly in the wall of noise, smells, visual distractions and expectations of secondary.

Not our family but one of the children I looked after: in this child's case the parents gave him the medication on school days so not weekends or holidays. You may find as he matures he may not need it aka you might be able to wean him off.
Another friend swore by not eliminating certain preservatives and artificial colouring it might be worth a try

DS will need to go through a process called titration. This may be done by the psychiatrist or a specialist titration nurse. He will have to have a baseline health check, which depending on the requirements of the psychiatrist or service, may include weight, blood pressure, heart rate, possibly an ECG or blood tests if there are any pre-existing conditions of concern or history in the family (eg heart disease)

You may need to record and report things like weight, blood pressure and pulse rate and report those along with any effects, positive and/or negative, back to the professional on a weekly basis. This may include asking teachers for feedback from school. DS will start on the lowest dose for his age/height/weight and they will increase the dose possibly weekly or fortnightly until they find a dose that offers optimal positive effects with minimal or no side effects.

If you go ahead it is worth asking your psychiatrist or titration nurse who to contact and how if you have concerns about side effects in between appointments. Some people have few/none of course, but tolerance varies between people and can vary between doses quite widely.

I know this wasn't your original point, however does he have an EHCP?

I'd tell school because what is manageable in primary can quickly become unmanageable in secondary. A diagnosis is a flag to secondary which otherwise wouldn't be there without an EHCP.

It sounds like you're worried that the drug is an amphetamine, so it sounds like a dangerous recreational drug. Remember that prescription drugs are very tightly controlled, and are in totally different formulations and doses than what people misuse dangerously - it's not the same thing. Ritalin (methylphenidate) is very, very widely prescribed and used by kids with ADHD. I don't have personal experience but like others here, I've seen friends whose lives were transformed (for the better) by taking it, including at least one kid who is not neurotypical and sounds like your son.