High functioning autism non verbal and melatonin

[Scohpahni]

Hi

i was just wondering if anyone had any advice or previous experiences with autism and melatonin

a friend of mine is having struggles with her 6 year old non verbal child who is on 4ml of melatonin per night to go to sleep.

This last week the child has been going to bed at 7:30-8pm and waking up at 12/1am and staying awake till 6am

the child is also head banging and physically hurting my friend like scratching, slapping and just all round struggling

she goes to a special school and has support there and also they have had a meeting at the school but she still feels under supported and now as you can imagine very tired and emotional that her child feels this way and is doing this.

thank you if you got this far. She just doesn’t know what to do or how because when she reaches out no one seems to listen or give good advice

Your friend needs to see her GP or consultant.

She needs to go back to the sleep consultant and ask for a review. There's fast acting and slow acting melatonin, and you can develop a tolerance for it, making it harder for it to do it's job.

Too much melatonin can also cause early peaks and early waking.

Why does your title say “high functioning autism”. This post is confusing so it is hard to offer advice.

My son has been on melatonin since he was four: it was prescribed before the formal diagnosis but by a paediatrician. His behaviour improved instantly because of course he was no longer chronically tired and anxious.

we also: took all colourings and most gluten out of his diet and i started giving him probiotics. We saw a big improvement but if course it was mainly due to getting enough sleep.

Maybe because the child has high functioning autism and is non verbal- highly relevant to the issue of no sleep because had I of not mentioned it you’d of all thought that the child was a neuro typical child and was just having a regression of some sort.

I did think this, I will advise this because the poor child is also suffering aswell as mum ofcourse! I just wanted to see if anyone had any experience but I will say that’s what they needed do first! I went today to help with food shop as partner was out and it wasn’t nice to see just pure exhaustion.

I think people meant his doesn't sound like 'high functioning' autism.

But what do you mean by ‘high functioning’?

She needs to go back to her paed. GPs can't prescribe melatonin. My DS has never had over 6 hours sleep, usually 5. We stopped trying bed time at 7.30 and now he sleeps from 12 until 5 or 6 which is a lot more manageable. Slow release didn't help even at 10 mg so we stuck with 5 which gives a decent amount of sleep at a decent ish time although anything is an improvement on no melatonin- the most he's gone with no sleep is 4 days with us taking shifts.

Your friend needs to speak to the consultant &/or request a referral to a sleep clinic. There are options. Playing about with the timings. Increasing the dose. If DC is on immediate release melatonin, adding in prolonged release. Giving a second dose if waking early in the night. Other medication to aid sleep either as well as melatonin or instead of.

When you say they feel under supported at school, what do you mean? Do you mean the provision in their EHCP isn’t being provided? Or do you mean the EHCP. Doesn’t include all the necessary provision &/or the placement isn’t the right placement? Have they requested an early review of the EHCP?

Nothing OP has written means the child can’t have high functioning autism.

In the original sense of the meaning, all high functioning autism meant was that the person has an IQ of 70+ (i.e. no do-morbid learning disability) and had a language delay as a young child. The problem is so many people now use it to mean something it wasn’t originally intended to mean.

If the child is non-verbal then they’re definitely not high functioning!

This is not true! One can have high functioning autism and be non-verbal.

Melatonin can be fast or slow release and we were told you can split the dose as well so do one at bedtime and one again in the wake up time.

This isn't true. One of mine didn't speak until 8. He aced gcse and a levels and now runs his own business

My high-functioning autistic son was non verbal. He could read and write, but he didn’t talk. It’s not difficult to understand.

The high functioning part doesn’t match with non-verbal, that’s why people are confused. High functioning is more your stereotypical ‘Sheldon’ type of ASD and not as you describe with attending a special school.

I am going to assume you mean high level needs/severe ASD and I can answer this as in same situation as your friend. Melatonin is hit and miss IME and it only helps some kids and sometimes.

my advice if they have the space is to get a double bed for the child so the parent can get some form of rest and not be up and down all night. Also throwing out the rule book on normal parenting advice. If the child can’t sleep and can’t turn their brain off at 1am sometimes watching their fave movie cuddled up is better than fighting them and more likely that they will drift off than insisting it’s sleep time. I really feel for your friend. We are a little older now with our DC and have more good nights than bad but rarely all night. It’s like never escaping the sleep deprivation of baby/toddler years.

we haven’t yet had to pursue medication (melatonin is just a natural hormone supplement) but if the physical behaviour continues this may be something your friend should seek advice on.

Just saw this and did think this example would be the exception but doesn’t fit with the rest of the description in OP. Or perhaps I’m wrong and I’m painfully aware I’ve just ignore the met one autistic person, then you’ve met one autistic person advice. That’s amazing that your son is high functioning without being verbal.

That’s a fairly early bedtime, especially bearing in mind that many youngsters with autism sleep less hours than their typical peers, by 6 my dd slept 8 hours maximum and naturally didn’t fall asleep until around 11pm, earlier bedtimes than 10pm were counter productive and melatonin didn’t work, still didn’t sleep until her body was ready or as your friend has discovered, she woke 6-8 hours later

The high functioning part doesn’t match with non-verbal, that’s why people are confused. High functioning is more your stereotypical ‘Sheldon’ type of ASD and not as you describe with attending a special school.

This just isn’t true and highlights how little understanding of autism there is. Nothing the OP has written means the child can’t have high functioning autism. You can be non-verbal and have high functioning autism. You can attend a special school and have high functioning autism.

Using the older terminology, and using the stereotypes like you have posted, Sheldon is more stereotypical of what would have been diagnosed as Asperger Syndrome than what would previously have been called high functioning autism.

We have just been prescribed melatonin for my 5yo ASD son - not much advice i can give because with autism there's no one size fits all. It's exhausting and all consuming being a mum to a child with my sons profile and you are a wonderful friend for offering support.

High functioning means the opposite. Your friend’s son is not high functioning.

You’re really not non-verbal with high functioning autism - although you may be mute. That is something entirely different. The description is clearly not of a high functioning child (written as the mother of an adult non-verbal autistic son and who works at all levels of functioning).

We found if we used melatonin for more than two weeks it tended to stop working - so we would use it to reset a sleep pattern (the sort of sleep pattern her son is currently in tbh - but he may need a break before reintroducing).

I would also ask for a thorough medical check. Can he communicate pain? How are bowels? Teeth? Are blood tests possible? Does paracetamol help? The vast majority of head banging and aggression in our experience has been related to health. We had 7 years of arguing with medics before finding the medical cause - instant improvement once treated.

Oh I didn’t feel like I needed to list the symptoms

special school
non verbal which I thought was the biggest clue
headbanging
hurting everyone in the home including mother
has melatonin
and on top of all this which I didn’t think I needed to mention has an EHCP in place

but thank you for asking it makes it easier too understand that people don’t believe non verbal and melatonin don’t mean autism.

most of us are using “high functioning” as a substitute for Asperger’s since we were told we had to stop using the term. Hence the confusion. I’m still angry with the change because it causes no end of problems with clarity.

Back to OP. When sleep is the goal, all rules need to go out the window.

my parents tell me stories of putting me in a playpen in front of late night 70s television and taking turns dozing on the sofa.

with my daughter, I shared a bed with her for years. Eventually, we transitioned her to her own room, but we put a small bed in our bedroom for her. She was allowed to move into our room anytime. Eventually we set rules like anytime after 11pm, then kept bumping it later.

we also broke down and put a tv in her room. This went against every instinct I had as a parent. We kept the remote control for years. If she had a panic attack in the night, once she was past it, we would turn it on to something appropriate with a sleep timer. The distraction helped her fall back asleep. She didn’t abuse the privilege and eventually as she got older we were able to give her the remote and she didn’t need to wake us up unless it was really bad and she needed comfort.

Ohhhh I meant the other way now I feel silly I meant the autism is high!! Now I realise high functioning means like normal ish with less symptoms!! Now I feel silly sorry everyone oops hahaha!