Anxiety/ Sleep probs in 6 yr old with ASD

[humptyhoo]

Hello. My little girl is almost 6 and was diagnosed with an ASD 3 yrs ago. She has always been highly anxious, although also is a happy smiley little thing a lot of the time too, so not everyone would see the anxious side (and hence not everyone would understand what I'm about to explain). I feel such a bad parent for even voicing this, but things are bad at the moment and I'm wondering whether to ask her paed for any anti anxiety meds? She has constant tics (lip picking and throat clearing being the current faves) which can disappear for a couple of hours when she's distracted, but at other times (eg school, during the night or in social situations- ie anywhere where any pressure on her) she'll be doing it like a mad thing bless her. Our close family only see the happy little girl as when she's in their company and in a comfortable environment she's a different, much more relaxed person. We have (yet again) had a sleepless night, with her waking at midnight after just 3 hrs sleep, then not going back to sleep til around 5. I know this may sound an exaggeration, but it is not. (My son then wakes at around 6). We need to give her melatonin to get her to sleep in the first place but a 2nd dose doesn't work in the middle of the night, and once she's awake she has the usual difficulties with re-settling and the tics really kick in. She'll then be awake for hours if not all night. We all end up upset and just don't know what to do. I can't believe she just doesn't need the sleep as she really looks tired in the morning and becomes very clumsy and irritable (unsurprisingly) when things are this bad. My poor husband has gone to work in tears, feeling awful that he's become cross with her when we know it's not her fault that she's like this. Can anyone identify with this please and offer any advice? Does anyone have any experience of anti-anxiety meds as I know nothing about them and it's only this morning that I've started to consider whether we should look into it. Thanks for reading this awfully long ramble...

Hi Hummptyhoo, my ds (4) has asd and also has problems with sleep, I really feel for you as it is a nightmare for all concerned. Melatonin rarely helps, especially when he wakes in the middle of the night.
We have resorted to having a tv with recordable freeview in his room along with dvd's as he will sometimes lie quietly and watch the tv, and he will sometimes fall asleep while watching. I am waiting for OT to give me a weighted blanket on trial to see if this helps at all.
He does not have the levels of anxiety your dd suffers from so I cannot really offer any advice. Can she tell you what is causing her anxiety?
Sorry not much help but didn't want to read and run as I know how awful it is when you have a child who has the rest of the house up most of the night.

My son had chronic sleep problems and was up for hours like you say. often completely silent but awake. he doesn't have tics but had sleep jerks which would keep him awake. you've probaby already tried it but he improved enormously after daily doses of Omega 3. we also have been prescribed alimemazine, which we use occasionally to help him sleep. i think it is a mild anithistamine.

I really feel for you as I have two girls with AS and sleep issues. Melatonin is working well for the older one but we have to be more creative with the DD2. We have had some success with diaphramatic breathing taught to her by the CAMHS psychologist and sometimes an audiobook on an iPod can switch her off enough to fall asleep again. We occasionally go for a midnight/1.00am walk to break the cycle too.

Our older daugher takes meds for anxiety and they work well but I was adamant that we only used them as a last resort and sorted out everything she found hard at school first. Although she didn't openly express her anxiety at school she was very very scared there and now she has more appropriate provision her general anxiety levels are more manageable anyway. Is there anything you need to sort out at school for your DD? It can make a big difference.

The psychiatrist said that they only meds licensed for children were for OCD which is Sertraline although this is licensed for anxiety in adults so it does the job. It works well with few side effects.

HTH

Thanks to everyone for these messages. Nice to know I'm not alone. Anything and everything makes her anxious. We have regular meetings with teachers and do all we can at school to make it easier but her main worry at school is maths (which she simply can't get her head round although she's fab at reading). But to be honest even the smallest thing can make her worry. I just don't want her to go through life like this- it breaks my heart.

As a mum who's on the autism spectrum, this sounds SO familiar from my own younger years (er, and even now! ).

It's difficult to explain how much school and social events 'hurt', but they do. The sensory overload is, for many of us, literally painful and we have to find ways to endure it - same as you being asked to go to the dentists 7 hrs a day, Monday to Friday. Could you? Would you be anxious about it? Would giving you medication be the answer?

Arguably the answer is to make the environment less of a challenge for us. That way we don't have real things to fear for real reasons. But schools rarely understand the issues.

It's worth asking them to do a sensory audit. If they look blank, point them to people like me or the local autism charities for help, advice and assistance with things like this.

What can really help is ways to block out sensory overload. A coat or blanket to wrap ourselves in can really help. So can earmuffs to muffle some of the sound. Sunglasses to cut out too much light. A quiet area to retreat to, especially at break times or during social events.

With sleep, I find a heavy weight on me really helps (weighted blankets, thick duvet, whatever else). So does extra-smooth bedclothes and bed covers. Even the tiniest bits of seams or roughness is enough to wake me up, and then I'm awake for hours.

None of this might help, but it's worth a try. I'm not ruling out medication, but sometimes adaptations are a better answer.

Just wanted to say were in the same boat, dd is nearly 6 and lip picks, very moody/screamy, wetting herself (at home) and sleep is getting worse. Were seeing paed tomorrow. I think school has a lot to do with it but she was even worse in the holidays...routine change. :( The thing is dd does as she should when in school but then processes it at home...sometimes days later. She has ear defenders but doesnt ask for them, even with visual prompt cards. Also getting even more repetative/obsessive....and talking to me less.

School is being quite helpful...since she started having morning meltdowns on her way in, but I think some professional advice to back us up may help.

....will let you know advice we get tomorrow. :)

just to let you know, that FASB (Fair Access to Carers Breaks) assessment will now include ASD children, this means social services can come out and do an assessment and hopefully you may be eligible for direct payments (where you get a set amount of money and employ someone) or other help. I know it's not the answer you were looking for, but thought I'd post. My daughter has ASD due to mito (mitochondrial myopathy) and has been anxious for years, well, that's an understatement, she can be positively evil at times, bless. All the local neuro wanted to do was put her on medicine for schitzophrenia, which she isn't = i politely declined!! we are trying to find a neuro phychiatrist that may have an answer. She was only dx'd with mito in 09 when she was 15!!! apparently it's not uncommon for ASD kids to be misdiagnosed if there are other things going on! Just thought I'd 'put it out there' Good luck. we all get frazzled from time to time and we shouldn't feel guilty about it! Caring can be a nightmare at times x