Autistic child and ADHD medication?!?!

[SENSummer]

If you have a child with high care needs autism (the diagnosed young and not able to mask in day to day life kind of autism) what happened when you adhd medicated them?
Equally if you have experience with disabled kids in specialist school settings and have seen the differences medication made first hand I’d love to hear from you too.

please share your experiences as I’m trying to decide whether to pay a decent amount to have my 5yo diagnosed and medicated. He is a danger to himself and managing him is so so hard. He is on 1:1 care in a specialist school setting but when you can get him to focus for brief periods is very capable and bright. Mostly non verbal although his words are coming over the past few months.

posting here for traffic as wanting to make the decision soon

You need to speak to a doctor about this, OP, it must be difficult for you but you can't decide on medication on your own.

@healthybychristmas

Oh no sorry the company I would pay to privately diagnose/treat are nhs approved and handle lots of NHS referrals also so it’s all completely above board. I just want to know what happened when others did it to decide whether to spent the money or wait on an nhs waiting list for a few years

Agree with a previous poster. You aren't qualified to make this decision by yourself. You need to get expert advice.

In my (inexpert) experience, if your child is prescribed a medication for ADHD it will be to help him with his impulsivity, hyperactivity, inattention etc. - symptoms of ADHD but which may be part of his overall neurodiversity rather than specifically autism.

Have you looked up how expensive ADHD medication is if you go private? It's hundreds a month (£600 for my DD). Her GP wouldn't take over her care based on a private assessment. We still had to wait for the NHS diagnosis once she had it.

@CloudywMeatballs

He definitely had adhd, every support function involved including his specialist school think so. It’s a waiting list of several years for nhs diagnosis and they won’t even take the referral until he’s 6 in our area so as I said, I’m not trying to do this without medical input I’m literally just asking for others experiences of the same to decide whether it’s worth spending almost £3k to do it now rather than waiting on a waiting list several years

@Samas yes I’m aware it’s awful isn’t it but we do have the money and atm he’s spending all his time climbing out of windows and running naked down the street and climbing the walls so I’d pay it to stop that tbh.

They said at his age it’s likely to be more like £100pm but that’s due to him being on lower doses. It would increase with age

Thing is we can't tell you. Your child might have adhd or not
As for medications there are a variety and each interact different for each child

Practically- would they swallow a tablet? Would they cope with side effects in early days of headaches, nausea, sleep problems, the wear off around 6pm when meds leave their system, no appetite - esp with stimulant medication- could they eat enough on morning and evening to maintain weight.

Im not saying this to out you off as medication has helped my children immensely but they are on the more able side of spectrum in mainstream with support.

Have health care expressed they think its adhd. Iv know people pay thousands only to be told they weren't happy to diagnose adhd

This seems really really excessive, not questioning it but I suspect not usual in terms of cost. My child was on methylphenidate and depending on dose cost varied from 45-75 per month.

My friend has an autistic 10 year old - he has a few words now, but more like a toddler level.

They have been medicating him for adhd for about 6 months - it has made him calmer/more manageable/less prone to sudden meltdowns. But the flip side is that he is more anxious, showing obsessive compulsive behaviours, and more clingy to his parents than before.

So it’s not as straightforward as you would hope - it’s more that things have improved in some ways and worsened in others. The advice from the paediatrician has been to give it longer to get him used to it and find the right dosage for him.

Its a hard decision for sure.

Sorry, I misunderstood. I thought you were talking about ADHD medication to "treat" (not the right word, but you know what I mean!) his autism.

My now grown child has pretty severe ADHD along with other neurodiversities (although not autism), and medication really helped her, so I definitely think it's worth trying, and as soon as possible because it can take a long time to get the right medication/dose.

I'm not in the UK so I don't know how it works there (but, really, several years???!!!). If you are able to do it privately I would recommend looking into it.

Jesus Christ, the OP is asking IF he has ADHD diagnosed by a professional, does medication help at a young age.

If it doesn’t make much difference she will wait on the NHS list. If it does, she will pay privately to get the assessment and any treatment needed following the assessment.

OP you’d be better asking for this to be moved to the SEN board.

Also just to add that I have a friend who works in a community LD children’s service who feels that for some children ADHD meds can be a game changer but sadly alarge proportion of children cannot tolerate them due to side effects. My own Son has experienced a mental health crisis triggered by methylphenidate so my opinion now is that its a gamble.

@CloudywMeatballs - yes really - school has filled in the forms for my ten year old to be assessed for ADHD and we’ve been told minimum 3 years wait on the NHS.

He might get moved up the list if it becomes an emergency, eg if he is on the verge of being expelled from school for behavioural problems, but even then there’s no guarantee.

We’re going private because honestly we want to get a handle on things before we are fully hit by puberty as well!

There is a long running adhd meds thread op on SN children. My experience with an older AuDHD child has been very positive.

www.mumsnet.com/talk/special_needs/5057892-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others?page=31&reply=145297489

@Hankunamatata

This is exactly what I’m worried about. Paying all that money and them saying sorry but we can’t actually tell.

Paediatrician supports a referral for adhd screening but repeats that she isn’t the right person to diagnose adhd. My DH is a doctor in a different specialism (very little clue about adhd really) but we seem to be taken more seriously in medical situations because of this. As in they take his testimony on DS’s behaviours as being non exaggerated and factual or at least that’s my observation.

I just cannot bear the idea of spending so much money and them just not diagnosing because he’s non verbal ASD and they ‘can’t tell’ because essentially we might as well never have bothered in that case. I don’t mind if they assess him and say ‘he’s not and here’s why’ but I have heard of them basically using the ASD as a massive cop out and essentially just shrugging their shoulders.

That would annoy me, for all that money.

I have an AuDHD child. I think it will depend on why these behaviours are happening. If they are as a result of overstimulation leading to meltdown then no. If they are as a result of poor executive function then yes, maybe.

This is the potential issue. I know two children where medication has improved the ADHD but then 'revealed' other issues - for one it was also anxiety, for the other (a boy in puberty) he became more aggressive

Where are you, because I can recommend a very good private paediatrician in the Midlands who would be good at unpicking this.

He’s very young and there’s a reason why nhs won’t do the assessment. He may well get a diagnosis but like any medical diagnosis it’s up the clinician if they feel medication is appropriate or not. Like pp have said, medication can be helpful but can also be counter productive, making a child with ASD more anxious and the restricted and repetitive behaviours and sensory needs can increase.

id save your money and try and implement behavioural strategies as if he were ADHd. Medication is most effective anyway with good behavioural management approaches.

ADHD meds only put the natural pause into the brain that NT brains have. ADHD brains don’t have that and it stops us being able to think clearly and focus. ADHD meds don’t subdue or dampen down behavior it just basically makes you like you would be without adhd.
one of the potential issues when you also have ASD with adhd is that sometimes the ASD symptoms can appear worse when you try adhd meds

Why don’t you do Right to Choose.

So we are looking to medicate my son who has just been diagnosed as AuADHD, my understanding is that in some children whilst medication helps the ADHD it can heighten the ASD so it’s trying really to see what happens in individual cases and going from there. Also we are quoted £50-100 for medication a month.