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?

We totally struggled with the medication route we really wanted to try other avenues but honestly it's the best thing we've ever done I would say try it and see if it works for your child that's the most important part, if I ask my son now he is very much I hate not being on the medication x

DS diagnosed at same age with ASD and ADD although I’m not sure he has ADD a few years later. He took Ritalin for a while and he could really focus and stopped fidgeting but he hated taking it he didn’t feel himself. He was really reserved taking it and hardly ate and he was thin enough to start with. We stopped the medication after 3 months.

I saw a lot of secondary schools and chose one that I thought would work and quite quickly after joining his anxiety really reduced and he began to be able to focus. I don’t think academically he shows a lot of the time what he is capable of but it’s the ASD that holds him back.

I would say try the drugs there is little harm and then see how it goes. Just knowing his diagnosis really helped DS.

Thanks for responding. Do you mind if I ask some questions ... how old is your son now and when you started methylphenidate?

How did you explain things to him and how is it managed with school?

We have, reluctantly at first, just started our 12 year old ADHD boy on a course of medication and it's working well. He's on a very low dose as, when we tried increasing it, it caused side effects.
He doesn't have ASD though so it will be different.
It has improved his focus and he is not getting in so much trouble at school now (quite strict secondary school). He is generally calmer at home too. I hope that helps x

As an adult w

@Luluthecat So your DCs problems with focus were caused by anxiety and school being a stressor?

Was his junior school not the right environment for him and where have you found a secondary that works well? We are in South London and I can't identify any schools locally where he would not feel under pressure!

I should add, he takes a pill in the morning with breakfast and it lasts around 8 hours.

I have to say it was the best thing for us also. We had wanted to explore other options but my son developed very bad anxiety and had zero confidence. When we started the medication we saw such an improvement in his schoolwork and he was able to cope with his anxiety better.
He does still attend sessions with his psychologist as he also has OCD, however my only regret is not starting the medication sooner as we had a rough year before starting it trying to find other ways to support him.

I have ADHD. Medication has been life changing but the side effects can be awful. I now sweat a lot and whenever I’m stressed I’m unable to eat.

We had just about convinced ourselves that it was worth trying mediation but came away after call with psychiatrist feeling they do not agree. It was talked about as amphetamine - worrying and I don't fully understand how that would help?! Last resort type scenario.

While we have not yet shared diagnosis with school (still digesting and deciding next steps), school have been using lots of support and interventions for some time.

Sorry hit post!

As an adult female who was completely missed in childhood and is now struggling to get a diagnosis I would give my right hand to be properly diagnosed and medicated. IME and from talking to/reading accounts from other adults with ADHD it doesn't often get any easier as you get older (it certainly wasn't the case for me) without being medicated, or developing some serious coping/masking techniques, and the benefits of medication on MH outweigh the health risks of medication (which will be monitored).

I did read somewhere (can't remember where, probably just a link in a FB comment so don't take my word on it!) That medicating in childhood allows the brain to make better connections that are then with that person for life, and that medicated children are more likely to cope without meds in adulthood than ADHD adults who weren't medicated, because of these neuro pathways that the medication enabled them to make

Can I just ask, it is just methylphenidate that everyone is referring to as medication? We were told this was the only ADHD medication - but has different brand names.

Share the diagnosis with school ASAP, please! It really does help us, especially if there are specific strategies that may support your child.

Medication is individual. I've taught students who thrived on it, and others who didn't. I'd trial it and see. If it doesn't work, nothing lost.

My dd10 sounds very similar, hates school, very anxious and on edge and can't maintain friendships . I would love for her to trial some medication but I don't know how to go about it. I tried going down the cahms route but they don't want to know. The school have an educational psychologist that goes in once a week but senco have spoken to them and they don't feel she is eligible to see them despite my dd saying she wants to die on school mornings. Can I ask how you got a psychiatrist? Did you go private.

There are other options but that is the most flexible and easy to adjust to

Thank you for all the replies. I recognise a lot of symptoms in myself too.

And definitely share with school asap, my sons was managed really well in primary with limited medication but come secondary school unfortunately the things they use in primary to manage things (eg wobble cushions, fidget toys etc) mean they really stand out out secondary :(

Not sure what else they could do at primary school to accommodate him after diagnosis. He is already having one to one sessions with counsellor for wellbeing, seated at the front, receives time and attention from teachers when he has lost focus or to help him stay on task, he gets lots of praise and encouragement. He does fidget with pencils etc but they don't seem to mind that.

There is a non stimulate adhd medication. My dd is medicated with a stimulate during the day then has a mon stimulate at night. She's on the maximum doses for her weight. But she does so much better on it than off it. We've been trying to find the right balance since she was 8. She's now 13 and has been on these meds for a year.

Her appetite did struggle hugely shes a tiny wee thing but not underweight anymore. I make up for it by feeding high calories meals she also has breaks during school holidays.

If one medication doesn't work try the others until you find the balance. Also I find lack of sleep makes symptoms much worse so make sure they are having enough sleep. (can be hard I know)

Food colourings set off dd too especially blue and the aspartame sweeteners. I can go find the medication names if anyone wants to know when I get up tomorrow.

My son has ADHD and autism. Very intelligent but extremely hyperactive.

We tried medication but his private doctor said children who have autism along with adhd are best off on a non stimulant. We tried atomoxetine for nearly a year.

It made him so angry and sad. Very irritable.

We all made the decision together for him to come off meds and it was the best thing we did. He's so much more happier.

I think it just is trial and error with these things. We focus on diet and other forms of therapy.

I just completed a free course on future learn about ADHD and it seemed to recommend medication, it had proper university professors and research papers included. Maybe have a look at it? It was called something like understanding ADHD.

Thank you @Thelonelychicken . I am convinced sweets like Haribos make him very reactive and stressed. However other sugar (chocolate, refined white carbs) seem to help. He craves sugar - I think he needs it to focus sometimes!

You have pretty much described my DS there, asd diagnosed very young, adhd at 10.

He has no behavioural issues but huge trouble focusing and anxiety that they said medication would improve.

I went to the session held for parents of newly diagnosed kids and felt so alone in my thoughts. Isn't medicating for adhd social engineering? If there was a pill to cure autism would we be encouraged to use it? How is it different? Every other mum there was desperate for medication because their dc were in so much trouble at school and at risk of exclusion, I didn't feel able to ask my questions.

Anyway we didn't go down the medication route until the anxiety was really bad, and the side effects (depression, weight loss and lack of sleep) were awful and no improvement in focus. Psychologist just kept increasing the dose.

DS was the deciding factor in stopping the medication, he very much didn't want to take it which I believe is mainly down to his oppositional nature (asd) but also that he's been brought up being told that neuro diversity is a good thing and could not understand why this is different.

We have just revisited the adhd nurse since he is really struggling in lessons, and feel far more listened to than previously. She's prescribed a different medication that she thinks will suit him better and wants regular detailed feedback to tailor the dose. I'm really hoping it'll help him, he's always been happy at school but is lately noticing how much harder he finds it than others and is getting a bit reluctant. It's too early to tell yet but we'll give it a go.

Anyway, those are my thoughts and I'm sure they don't help that much but just wanted to share so you can see both sides.

@anxiousweewill that sounds tough going, I'm sorry things didn't work out. My DC also has autism but our psychiatrist was clear there are no other medications just amphetamine. I feel a little bit lost now we have the report - no follow up offered by the psychiatrist but we asked for a phone call and had very top level conversation without any real discussion.

I think you can try it. It doesn't mean he has to stay on them if they don't agree with him, or he has side effects, or simply hates the effect on him.

I know one child medicated for ADHD , it simply gave him the ability to focus ,apply himself and function. On the days he missed it , you could really tell mainly because he would become so easily frustrated by anything and everything which then meant no learning, negative social interactions with friends etc. and most of the day was spent trying to regulate himself.