ADHD and being investigated for ASD - to medicate or not?

[KOKOagainandagain]

DS2(7) is in year 3. He was observed in school by the specialist nurse after being referred to the neurology clinic by the comm paed. I now have the follow-up meeting with the paed next week. I have received the report of the classroom obs and know that the nurse has recommended a trial of medication to the paed.

Now, admittedly, I don't know what normal looks like, but I don't think he has ADHD. He doesn't like being told how or when to do things and so he just ignores instructions and requests. He has no social desire to please. He doesn't have meltdowns. He largely just doesn't give a toss but is showing increased anxiety (tics) now that he has started KS2.

Over the summer I started using a token reward system with him and it has been absolutely fantastic. The morning routine has been transformed and he now presents downstairs, fully dressed in a timely fashion. I use tokens for spellings and times tables but I don't even attempt any other homework with him.

The school have been advised (by SALT and ADHD nurse) to use a token reward system and know that we have had great success at home and so have recently started a worse than useless sticker system (random and inconsistent). They would prefer me to put him on medication rather than put in the support necessary so that the reward system works as an effective motivator and independent working skills can develop.

I have applied for SA over the phone but not sent my paperwork in yet. I have read on here that some people found that the ASD became more obvious once the ADHD was medicated. Can I ask why the medication was given in the first place? DS2 fidgets and gets out of his seat in class but he is not hyper or impulsive. What happens if DC are given medication 'by mistake'?

From a statementing pov it is 'better' to have a diagnosis of ASD than ADHD. I had considered telling the paed 'over my dead body' wrt medication but now I am not so sure that this is the right thing to do, either for him (school is not much fun with a 30 second attention span) or in terms of getting the right and complete diagnosis.

Any advice gratefully received

In DS1's case, there was no reaching him with any sort of reward system. He never stopped moving and he was mindblowingly impulsive. It was constant and getting through to him was like pinning down fog.

So our reaction to medication was "yes please" because his quality of life was so poor. We didn't want stimulants, though, as evenings were already thoroughly shit, he already had food refusal problems and his anxiety was through the roof, much of the time. These things are all known side effects of stimulants and we didn't want to make them worse.

So we started him on atomoxetine and it certainly didn't make him more autistic. He actually started being able to communicate simple things like "I'm tired" and he started to be able to do fun things that he could not access, before.

I understand your reluctance with your DS, though. It sounds like you can reach him, and that school could reach him, if they were organised and consistent enough.

Methylphenidate has a similar effect to very strong coffee, so if your DS was given it unnecessarily, he would probably be quite agitated and anxious (and not be able to sleep). If it was useful, his brain would actually be able to keep up with the world and it wouldn't have the OD on coffee effect.

I think you have to go with your gut instinct which from what you have said is a no to medication.

I have no experience but I think I would want the school to do the reward thing PROPERLY so it could be assessed for effectiveness PROPERLY. At least if it was given a real chance you could see if it would work and it might have amazing results at school as well as at home. IF it doesn't work when properly implemented then I would say look again at the medication.

My attitude to medication would undoubtedly be different if DS2 was not so, well, laid-back. And he can focus of hours on self-selected activities (minecraft, sploder etc).

I am concerned because he is 'complex' (duel exceptionality) and that ADHD could mask the ASD, ADOS would be inconclusive and we would need referral to somewhere more specialist. Any question mark over diagnosis would make the SA process longer.

On the other hand, unmedicated, impact on learning could not be greater. I have a written class observation of not being able to attend to whole class teaching and of being unable to work in small groups. He sometimes works outside of class (library) or with constant prompts in the classroom - even to write just the date and learning objective.

Would the school be able to say that I was ignoring medical advice and so refuse to put in extra support?

I think you have a good case for taking the classic approach of "wait and see", to be honest. And I'm sure you've seen me jump on posters for expounding the apparent evils of ADHD medication, before :o I think you're perfectly justified in holding off until post diagnosis.

Following this thread with interest.

I agree with ouryve - wait and see.

My DS was dx with ADHD (amongst everything else). However, I didn't want to medicate him because I was (and still am) convinced that if he was in the correct school environment with the correct support for his other problems, medication wouldn't be needed. I also have family history reasons for being very unsure about medication. As part of his Statement, the LA sent me to a NHS doctor - who was very sympathetic towards my concerns. Ironically the NHS doctor agreed 100% with me to "wait and see" and get the provision sorted out first, whilst my own experts (inc medical expert) all wanted him medicated.

It's not that I'm against the evils of ADHD medication but he had had such the wrong provision for his other problems and for so long and with such awful consequences, that I wanted to wait and see to determine if the right diagnosis, along with the correct provision, sorted some of it out.

I was told by my barrister that Tribunal would want to know why I refused to medicate but fortunately because the NHS doctor totally backed me up (in writing as part of his Statement), I was able to head this off and the Tribunal never raised it as a question.

Now he is in the correct environment, I think my decision to not medicate was totally correct. At this moment in time, he doesn't need to be medicated. Long term (especially when puberty kicks in!) I have no idea. Indie SS uses token reward system to great success with DS - he even does his reading homework so he can get more token rewards!

It's a tough one - but I'd go with your gut instinct

Further to what TOWIELA said, the reason I think you're justified is because you are in the middle of trying to get the full picture of your DS's difficulties. Meantime, his teachers need to try a more imaginative approach than just telling him, over and over again because, if anything important isn't fully realised by the diagnostic process because symptoms or behaviours are partially masked by medication which works at that time, they could find themselves with much more difficult problems than how to get him to write the date and title, further down the line.

TOWIE - thank you - very helpful. I assume eventual tribunal and so try to consider how present actions may be interpreted in the future .

I love the 'hoist by your own petard' approach - haven't we all been recommended to 'wait and see'? I think my comm paed will be on board - the SNAP questionnaire had to be repeated because it was strongly positive from school and negative from home (still negative).

ouryve - you are right - there appears to be (I can't find the post and can't remember the posters no reason to believe that ADHD medication would make ASD manifestations clearer to see (and so easier to diagnose), but, medication may better meet his needs in the classroom at the present at the cost of masking his longer term educational needs (and therefore make initial SA refusal more likely than 99.9%.)

Can I just say 'fuck'?

but, medication may better meet his needs in the classroom at the present at the cost of masking his longer term educational needs

^That was exactly what I feared and why I didn't medicate

At the risk of sounding like I am repeating what others have said already until appropriate provision has been decided on and been given a decent amount of time to take affect I think in this case the wait and see approach is the right thing to do, especially as he is still going through the dx process, very hard to see all the traits and behaviours if he is on medication designed to 'mute' them so to speak and that the school seems to be more interested in quick fixes rather than putting in the effort for techniques that have already been proved effective at home.

The decision to medicate a child isn't one to be made lightly, ds is ASD and in the process of ADHD assesment and the possibilty of medication is one that I am also going to have to consider but absolutely not until ds has finished the dx process and the fact that ds' school is very good and already has alot of strategy's ion place that have had a brilliant result but still he is unable to concentrate on his work without constant distractions and hooting/siren noises also will help with this.

He is your ds and the most important thing is that it FEELS right for you and your family, if your gut is telling you 'not now' then it is doing so for a reason, you know him best, trust your instincts.