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

This is what happens the parents sleep separately the mother sleeps with the child and the child even decides what the mums wearing to bed. It’s hard!

Melatonin is also only hard to get in the uk. It’s prescribed for children much more liberally where I live. It’s common for ASD children to take it of course, but it’s an otc medication so it is ultimately parent choice.

You’re really not non-verbal with high functioning autism

Yes, you can be. From OP’s recent post it appears that isn’t what she meant, but you can be.

No, I am not talking about mutism.

most of us are using “high functioning” as a substitute for Asperger’s

This is what I mean by people using high functioning to mean something it isn’t. High functioning does not equal Asperger Syndrome.

Don’t worry OP - it’s confusing. I agree with a PP re Asperger’s tbh. It made it much easier to understand the type of needs people had. Which isn’t to downplay anything, they’re just very different.

dh And I found other ways to connect. It’s a life phase and doesn’t last forever. It is hard, but so is having an ASD child.

sleep has to be the priority. It’s whatever works to get everyone sleep.

Even the people I know who can type still require a great deal of 1:1 or 2:1 support to function. I have yet to meet someone who is non-verbal in the traditional sense of the world who can function in daily life without considerable support.

Even someone like Lucy Blackman requires considerable support.

Donna Williams used to distinguish between those who developed language age 5 (not speech, language) and those who did not - and whilst there are some issues with that it is broadly true.

This is the problem. You, like many, are using high functioning to mean something it wasn’t originally intended to mean. All high functioning autism meant was that the person has an IQ of 70+ (i.e. no co-morbid learning disability) and had a language delay as a young child (different to Asperger Syndrome which was IQ of 70+ and no language delay as a young child). It wasn’t a comment on the support required. Someone who has high functioning autism can still require a significant amount of support.

We used to do a lot of bed shuffling tbh OP, largely because dh had to work full time in a demanding job, so dealing with sleep was my role (I also worked, but not as many hours).

I used to get told to change into my pjs at about 5pm. It was a way of making sure the day was done. I sometimes challenged it when it got too early. In terms of having to wear what is dictated it will probably be for similar reasons ‘now I know you are not going anywhere -mum in those clothes means the day is done’. It’s a pick your battles thing, she could trial introducing some changes backed up with a social story explaining about bed time wear?

Functioning is about how you function. I agree someone with high IQ can need a lot of support. But when people are non-verbal, banging heads and displaying distress using physical means they are clearly not high functioning.

I have met people who have performed extremely well academically for years and then had a burnout leading to being (temporarily hopefully) very low functioning. So yes I agree high IQ does not tell you everything about functioning but with intellectual disability on top of autism you are more likely to struggle.

I am all for assuming competence but that is not always respectful of those who are non-verbal. I made that error when my son had a mini language explosion using high tech AAC and it basically led to a complete breakdown.

“High/Low functioning” is not used anymore because it’s offensive to the autistic community and not helpful. It’s better to talk about low or high support needs, which often change according to the situation.
@Scohpahni your friend clearly needs support. She needs to figure out her son’s triggers and how to manage them and help him. For example could she pad a wall so that he could bang his head on that so he still gets the sensory stimulation that he is seeking? Does she use fidget toys with him? Does he communicate in other ways?

Functioning is about how you function.

As I said, that wasn’t the original intended definition. Many now use it to mean that, though, which is where the problems arise.

But when people are non-verbal, banging heads and displaying distress using physical means they are clearly not high functioning.

Using the original definition, they absolutely can be.

Nothing to do with presuming competence or not.

It’s prescribed by a doctor as per a paediatricians advice and prescription. I don’t know how it directly works but it is prescribed and has been in place for a while now and is often given a break from per parent decision. It helps child fall asleep and when I’ve had child over night with my child she is often asleep before my neuro typical child.

Honestly if its a significant change get as much checked health wise as possible. Bloods, teeth, diet, constipation, etc. My son always has phases of not sleeping but head banging and aggression is heavily influenced by health.

The problem with head banging is that if it is being used to drown out pain that any interference leads to even stronger head banging. It is incredibly difficult to get anyone to take it seriously unfortunately.

Maybe try paracetamol when he wakes. You can actually do a pain assessment protocol - but it needs a GP to oversee.

Thank you, I wish I could edit the title I really do as it made me feel silly but I meant high functioning autistic as in her autism is like high spectrum but as you say it can be seen as quite offensive.

This!! They had a 1-1 in mainstream and has recently had a 1-1 put into place in special school. wouldn’t gain anything in a mainstream and clearly struggles in special school if needs a 1/1 there too!

No apology needed, language preference changes all the time and it’s clear what you meant. I think it’s lovely that you’re trying to help. Hopefully your friend will get more support.

I have a lot of experience lay beside by 5yo who is wide awake despite being up 2am till 5am last night and had 6mg of melatonin at 7.30pm this evening....

Weve tried it all op. Slow release, half before bed and half when he wakes, Higher dosage gradually etc nothing works for us so im not sure what to suggest but she needs to speak to the pediatrician again. I've heard magnesium is good but haven't tried it yet (waiting for next review to ask pediatrician) tell your friend shes not alone and good luck!

There's a fantastic episode of inside our autistic minds with a non-verbal chap who is considered low support needs, and he explains how he is often stereotyped as high support needs and forgotten about simply because he can't speak. He obviously has still got support needs, because he is autistic, and that is just par for the course but people assume his capability is far lower than it actually is and it means he is not considered quite often in daily life.

My own cousin never learned how to talk, and was from a generation with no high tech AAC, and he can live mostly independently. He does still require a lot of support to live independently, but he is doing really well for himself. He's extremely academic, and he can't imagine a life where he isn't learning something new all the time.

Comparatively, I can speak, I can speak multiple languages, but I have selective mutism, and I require a significant amount of daily support, I have a lot of sensory issues that make my life quite isolated, and I have a social worker who I am in regular contact with following a needs assessment.

I understand the OP meant hugh support needs not high functioning, but there are autistic people out there who's primary difficulty is simply a lack of speech.

AAC can make a huge difference. In my son’s case he made huge progress with AAC (despite very significant language problems - he’s good at using context), We lost it all when AAC became a demand rather than a pleasure & now we’re back to head banging. The type of breakdown he had I have observed across the spectrum. it’s devastating tbh.

But for aggression and headbanging definitely rule out health first - and keep going back if not listened to.

In my experience of an autistic child who doesn't sleep, there is very little support from professionals. They could try to slow release tablets but she might already be on those. We do the liquid because my son can't take a tablet. For us this would be too early a bed time, we find if we do 9:15-30pm, he has a better chance of sleeping through and not waking a midnight. This is what would happen if we did 7pm bedtime. We don't find a second dose in the night does anything, we have to just wait it out or he frequently sleeps at his specialist school.

How late does she give the melatonin? I was told to give it as near to bedtime as possible. Does she have the modified release version, or not. It sounds like she needs to talk to her paediatrician for a review. You can also have a top up or split the dose.

Professionals don't use the term 'high-functioning' any more. Autism is a spectrum not a scale. Please can we stop using the defunct term?

Yours,
A tired SEND Teacher on her 5th EHCP review of the year so far.

My child has adhd rather than autism, so this might not be helpful but I would:

Make bedtime significantly later so that most sleep happens when mum wants to sleep. So maybe bath and melatonin at 8.30, bedtime at 9. Ideally asleep by 9.30 and mum goes to sleep as soon as he does.

Make sure he is getting some breaks from the melatonin - we use it on school nights and not on weekends - which keeps it working effectively.

Not try and enforce sleep at all - if he wakes at 3 then he wakes at 3 - but try and keep lights low and activities calm until morning. And then push him through till the later bedtime time, hopefully things will improve after a few days.

Like a pp said, if he’s unable to communicate need I would try coupol when he wakes at night to see if he is in pain somewhere.

My albeit rudimentary understanding of melatonin is that supplementing it is just that. Supplementing, and it's meant to work with the body's natural melatonin cycle to make sure there's enough melatonin in it to tell the body it needs to go to sleep.

The peak should drop off eventually so cortisol can rise, telling the body to wake but for some people it drops off far too early. That's why re-dosing doesn't always work because it isn't working with the body's natural melatonin cycle.

I take melatonin myself and when I take too much it gives me horrible vivid nightmares and it makes it feel like I'm having all my sleep all at once too fast and I wake up feeling really hungover. Sleep clinic have always advised us that the best dose of melatonin is the lowest possible dose that works for you.

DS is also on melatonin, but we take frequent breaks from it, and accept some nights will be fragmented, but it's in order to ensure the his doses stay lower and he doesn't have the horrible side effects that he can't verbally communicate due to his lack of speech.