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Autism advice on whether condition worsens

9 replies

ronaldmacdonald · 24/09/2012 23:05

Just wondered whether there were any Mums out there with any tips on help with sleep for a high functioning autistic child of seven. Each night from about 7 o'clock onwards he's in a state of high stress, feeling itchy, irritable, sad that he's been all over the gaff in the day and just generally feeling frazzled and ends up actually head banging his self to sleep most nights. I say head banging but it's more like head hopping; as his whole body is jumping up and down with his head while he bounces up and down on the bed trying to sleep...Any herbal suggestions or even prescription ones. ? Thanks

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ronaldmacdonald · 24/09/2012 23:16

Also meant to ask whether autism gets worse with age, as I've only just been told that it's likely that my son has this condition (based on lots of behaviours displayed), but even though i've known there's been something not quite right about him for years it's been quite manageable. Now he's finally been seen by a cahms team, but it's like he's symptoms have rocketed over the last 2 months and it's getting worse by the day. He's currently on a weeks exclusion from school and his behaviour there has gone from them not even taking me seriously when i've been constantly asking them whether they have any concerns to him to him having massive violent outbursts over the last couple of weeks in school. I'm wondering whether the transformation from the infants class and playground to the juniors has made things worse. The school are absolutely gobsmacked by it all as they say they'v never really seen any signs in him whatsoever.

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Triggles · 24/09/2012 23:28

Our DS2 is 6yo, and we've only recently (in the last month) started him on Melatonin in the evening. It was literally taking him hours to get to sleep and getting worse, so the paed recommended it. It has made a huge difference for him. Within an hour of taking the meds (he takes the liquid form), he is yawning and ready to sleep. He's up frighteningly early (before 5am) but well rested, which is so much better than him starting the day stressed and frazzled as he's been up most of the night, which was what we were dealing with previously.

Obviously, I have no idea what would work best for your son, however, this is what we are finding at this point is the best solution for us and our son. We were finding the hours in the evening far too stressful - for all of us.

bochead · 25/09/2012 00:02

If he has a diagnosis then St Thomas's neuroscience department are currently running a sleep study under prof Paul Gringrass using weighted blankets. Call em as they have some great hints and tips not found elsewhere Wink !

ronaldmacdonald · 11/12/2012 12:12

Thank you for yr advice.....didn't get back on here after posting this question so only just seen them . Thank u x

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moosemama · 11/12/2012 12:47

It is extremely common for things to get worse, at least temporarily, when children first go into the juniors. It was the first year of the juniors when things really came to a head for ds1 and that's how we ended up with a proper assessment and diagnosis (AS). Similar case for us, the school swore they hadn't seen any red flags prior to that, despite us raising it with them many, many times.

So much changes in year 3. The expectations of childrens' behaviour, the classroom set up, more rigid timetable with less free-choice/play, less classroom support as less TA's allocated to junior classes, one less playtime and on top of all that the social side of things starts to really change as their friends mature and start leaving them behind developmentally. I honestly think years 3 and 6 are the worst possible years for children with ASD. I was beside myself with worry about ds in year 3 and we are right back there again now he's in year 6. Sad

Ds has similar sleep issues as well, again, worsening when he entered the juniors. He's 10 now and sleep is one of the first things to go haywire when he's stressed.

Things that have worked for us are:

  • Having a talking/download session before he goes to sleep so that he can release any worries before he tries to sleep.
  • Making sure he has a good hour of quiet time before bed, so either reading with us or on his own now he's older or listening to some calming music.
  • Having a set bedtime routine that includes things which reduce his anxiety. For my ds this includes saying a little prayer and having the same song sung to him, as well as allowing him some degree of ritual regarding the positioning of things around his bed eg his favourite cuddly toy, his bedside clock and his little angel figurine. (I know it sounds like we are religious, but we're not, ds just finds these things comforting.)

I have read some good things about some of the child meditation cds that are available on Amazon and want to try some of those sometime soon, although apparently they tend to either work brilliantly or make things worse depending on the child. There are a couple on there that have positive reviews written by parents of children with ASD, so we are going to give those a go.

Another thing his ASD teacher has suggested is to get a little notebook, sit quietly with him each evening and have a chat, helping him to come up with at least three nice things about his day. They don't have to be big things, perhaps just he laughed at something on the television, he enjoyed his sandwiches etc. Apparently they call these 'Sparkle Books' with younger children, but my ds just wants to call it his positive thoughts book. I think the idea is that it gets them to focus on happy thoughts and this helps to relax them before they start trying to sleep. I have no idea if it will work, as we haven't really got into it with ds yet, but it might be worth a try.

Finally, not sure if this will be of any interest either, but my ds's sleep pattern definitely improved when we started him on high strength omega oil. We just add it to his porridge once it's cooled in the morning or add it to yoghurt, as the one we have is vegetarian so doesn't taste really fishy like some do. If you do a quick search on MNSN, there are lots of threads with advice on the best omega oil pills different people have tried.

The paed at ds's Statutory Assessment suggested melatonin, but at the time his sleep wasn't too bad, mainly because he was happy and well supported at school. Fast forward a year and I wish we'd taken her up on it, because he is literally not sleeping at all at the moment and we are all exhausted as a result.

Ultimately though, the only thing that is really going to help is making sure he is properly supported in school, to reduce his stress and anxiety levels. You say someone has suggested he may have ASD to you. Has he been referred for assessment at all? If the school are unwilling you can go to your GP and ask to be referred, preferably to a developmental paediatrician.

ronaldmacdonald · 11/12/2012 12:55

Thank you so much for your response and suggestions. The reason I came back on mumsnet is to post another question/problem which is to do with the ongoing development assessment :/...I will definitely be back on later when I'v got more time to post, because there are always so many willing to share there advice :-) Thank you x

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StarOfLightMcKings3 · 12/12/2012 14:03

I don't think autism gets worse no. It causes a developmental delay, not a developmental halt. The trouble is though that it is a hidden disability and the social expectations increase faster than the child is able to keep up which gives the 'impression' that the child is getting worse. I suppose they are in relation to their peers, but in absolute values many can catch up, or learn how to navigate at least. For some this will take longer than their lifetime, but for many many people with autism, provided they have had the right intervention and support they can close the gap to an extent as young people.

ronaldmacdonald · 12/12/2012 15:31

Staroflightmckings3 Your right It's defiantly a HIDDEN disability in the Higher functioning. For years I thought I just had this hyper, strong willed child,....then this is thrown up :-0 ... And it's understandable that the schools are baffled really I suppose cause almost every Autistic person is different, their not all the classic symptom cases and there's no physical indications really either....still got the problem that my Son doesn't have formally diagnosis as yet though....But least i've got you guys to come to for help when i'm stressing :-)

And mamamoose my son seems to have started to adjusted into the juniors finally, Thankfully, still lots of issues but no where near as bad as at beginning of term when he was attacking the teachers on a weekly basis.....still has times where he retreats under the table in lesson if it all gets on top, but the teachers let him if he needs.He's had his assessment with the developmental team but apparently they need to go over everything and that takes a while, might be invited back in for further information gathering ..... seems all so long and drawn out, don't know why I thought it was gonna be straight forward,:-! ....nothing ever is....and have been warned that even once my son has diagnosis (if he gets it) not to expect things to be hunky dory.....just gotta soldier on i suppose. :-)

xx

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sickofsocalledexperts · 12/12/2012 16:54

Another vote for melatonin. Sanity saver!

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