Published on 12, July, 2020
Hi,
My first time on the forums and I'm so hoping someone can help. I'll try really hard to be brief!
14 yr old high academic achieving daughter with significant High functioning autism traits since childhood and waiting date (after team said referral was appropriate) for assessment with Lorna Wing Centre. Up until March this year 99% attendance, all work done, struggled and very tired every day after school but managed. Went to bed for three days and seemed really exhausted and tired and low. Hasn't come back from this really and swings between very low and hyper sensitive to noise and light - so in bed in dark room with door shut often, or unnaturally bright if on phone to a friend (very rare) or has to see a member of the family. School attendance down to 50% or lower and very little attempt to work at home. On occasions she can be "bright and breezy" for a few days if necessary eg when we had my older daughters wedding; when she hlp d me with my step grandchildren for a few days... but then seems really exhausted and depressed again. Has experienced full on anxiety attacks since March and says she feels anxious a lot of the time. Only seems to feel safe in her room or locked in bathroom (for ages and ages - even took guitar in there!) will hit walls etc when really frustrated, bruised eye socket last week - by banging head on knees she said.
She belongs to a drama club and loves it and is getting there twice a week. School really supportive and have given her escape card, happy to see her whenever she can make it, don't make too much fuss about homework etc. She is predicted 8s at GCSE and has told us she feels a failure whenever she is below target - which being in yr 10 she often is, there's a whole 2 years almost to go. She did very well at primary and the government number crunching machine..... (I'm a teacher myself but don't get me started!)
She has just refused, again, to come to GP with me. GP is lovely and gives loads of time and Amy, who is usually scared of GP and hasn't only needed to go about twice in childhood, says she isn't scared of her at all. Yet she just keeps saying she doesn't care and doesn't want help.
Some of her behaviours can feel very controlling - e.g she can be so lovely to us if she really wants scrambled egg on toast or money towards something she's seen online, but then she can just tell us to leave her room, not communicate at all, not go to school.... I remember her saying she always thought you had to follow all the rules but she now knows nothing much happens if you don't! People have ask d us how we used to sanction her... believe it or not we didn't have to. She is more likely to get up if we don't ask her to.... this sounds likel typical teenage behaviour I know in some ways but although I'm being told "it's normal"- it isn't....
She was referred for counselling and tried very hard to go. She accessed three sessions then became very anxious and said it was like playing a role.. she didn't know what she was supposed to say to this person she didn't know in a place she didn't know so she "role played a teenager with a problem".
So the questions:
1. Can it be that a teenage girl with hfa just "suddenly" melts down to such an extent that school refusal plus staying in bed all weekend etc to.. not wanting to face life occurs?
2. If so are we right to keep trying every day to get her to school? The battles are exhausting. We've even suggested home education but she is adamant she wants to stay at her current school - but she doesn't go! Any tips really welcome as it's just awful here at the moment. Do we just ignore her or give two prompts or keep on and on.....
3. Could school be just too overwhelming for her? But without her really understanding this for herself... just knows she has a bad feeling and wants to avoid it? She is so scared of more anxiety attacks and seems to be retreating from life into room.... very poor sleep pattern too.
4. It is tempting to introduce consequences. Internet is off overnight. Devices now allowed during school time unless wanting to work (hardly ever) . Our instinct says to let her go to drama but we're older parents and another rule we lived by was "if you don't go to school you don't go out in the evening".
5. Why won't she confide in us, talk to us? She will sometimes have a long chat with me on text. My husband feels we should be able to talk face to face so to speak.... is it ok to text or am I enabling her to retreat even further?
We have a school meeting coming up. Education welfare not involved. Assessment in early November I think but we'll have the same person the next day - although she'll maybe be relieved if she does get a diagnosis and that might help. CAMHS said she didn't meet threshold... GP thinks we could try again but is it best to get the assessment done first?
I'm so sad and so tired. I want to help her to feel life is worth living but she's finding it hard to let us help and feels very shut away. She has so many strengths and qualities but is struggling so much right now.
Any help or experiences which show we're not alone or barking up completely the wrong tree really appreciated. How to engage her in wanting life to feel better?
Thanks,
Hi, I'm the mother of a 14-year-old boy recently diagnosed boy but so much of this thread resonates with me -- Karen61: there are a lot of similarities between your daughter and my son - and we're the same age I think :) I'm also new to this forum so apologies if the thread is now 'over' ... or please let me know if maybe I should start a new one...
Anyway, I'd like though to say a big thank you to those who've replied with their own experiences - I'm finding things quite difficult at the moment so anything that makes me feel like there may be a way forward I'm grasping at it. I won't go into the whole background of L and details of his current state, but suffice to say that the past three years have been pretty horrible and I see receiving the diagnosis finally last month as a positive thing. But now I'm feeling that both he and the family are being abandoned. CAMHS here don't see autism as a mental health issue per se, which I totally understand, but there are many associated mental health issues my son's experiencing as a result of living in an NT world (see how much I've learned!!) -- the situation where I live may be particularly bad as waiting lists for camhs are very long and they're particularly disorganised here. The school has been very obstructive to date, though now with a diagnosis they do seem like like they may be a bit more forthcoming (usual problem: high achieving child; they don't really care so long as he holds it together in school ... which of course he's now beginning not to in any case). I have so many questions I don't really know where to go. If anybody can help I'd be very grateful.
In particular, the school question: L has not gone to school today - first time this school year but he lost quite a few last year. I suspect things will only get worse. Should I push this? Someone on this thread offered the advice they were given about not worrying about GCSE grades and I realise I have a lot of re-adjustment of expectations/hopes etc. but can we really just let it all go like that? He does no for whatsoever out of school and hasn't done for a good couple of years., His school marks are plummeting and it's not being replaced by anything other than greater skills at computer games. I'm concerned for his future. Which leads me on to ...
We can't control the screens thing at all. L says he hates me and his father because we won't buy him a games machine. There's quite a lot of money involved in this (which we don't have but could find if necessary) but in any case he's already 'lost' to the various screen-based activities he has access to. He's more than obsessive in this ... and I understand that for him it helps in controlling his anxiety and it's where he feels most comfortable. At times he's been really eloquent about expressing this. But there's no down time at all. We're not able to just turn the wi-fi off in the house either... and there is always a feeling that things could get violent if devices are taken away (should we get hold of them). I really don't know what to do about this at all. He is playing games or watching YouTube every waking hour at the moment, into the early hours (1-3am is his usual bed times... which means he's very tired... he misses breakfast a lot .. and other meals).
Tangible question: should I consider asking the GP about melatonin? I don't really want to 'medicate' my son but maybe this would help at least keep the gaming to reasonable hours and help with the schooling?
There is also the issue that his NT sibling sees him getting all this screen time and sees him as privileged. I've tried to explain to my other child that this isn't the case ... but although he understand at one level, at another he doesn't - and I guess the past few years have been difficult for him as all energies have been expended on the difficulties of L. I'm finding dealing with child 2 (aged 13) differently from child 1 very tricky indeed. But there's simply no way I should treat them the same.
I realise I'm being quite ramble-y-- and apologies. But finally, L himself is not really 'engaging' with his diagnosis. He says it's 'boring'. Though he says everything is boring, actually (In this, as in quite a lot of other stuff, I'm having real difficulties disentangling the teenage hormonal stuff from the autism stuff). There is such interesting material 'out there' that he could look at. I think he could be really inspired by the autism community in so many ways - and there's a local teen club I'd love him to go to because he would meet so many other kids he would get on with but he has flown into a rage when I've suggested it. I think maybe it seems very frightening to him but if anybody has any suggestions asa to how he can find both a positive outlook and some help for his current problems through understanding his diagnosis better I'd be very grateful.
This isn't quite the quick note I'd aimed for. Apologies again.
Thank you if you've got this far ;-)
Oh the screens! I laugh when I remember we used to have a 'one hour screen time a day' rule! That's been well and truly out the window for some time.
Our problem is that M does use her phone for some quite therapeutic activities. One of M's obsessions is cartoons. It makes her feel safe to watch them as it is a link to childhood when everything was easier for her - she is very scared of growing up. (She's 15 and in Y11). For her it's a world she can control, it's predictable and familiar. I guess the same can be said for computer games - there is that element of control, in a world that, for our kids, must feel very out-of-control at times.
M also uses her phone to write stories and draw pictures. She's made up her own cartoon characters and scripts, and has a dream to make them into a TV show one day - given how she was a year ago, when she was barely able to function and couldn't see the point in anything, we're thrilled about this.
So for us the screens have had some really good benefits. But M also spends an awful lot of time scrolling mindlessly through Tumblr, something we're less happy about. And getting her off the screen to exercise, eat, or engage in other activities can seem like a real battle at times!
We do switch the wifi off at 11pm - unless M is having a really bad evening, in which case we leave it on as a safety net so she can watch cartoons if she can't get to sleep. We have found over the past year that we've had to rethink a lot of our parenting techniques - and letting go of some of our parental expectations has been really hard. It's been a steep learning curve!
I can’t really offer much advice apart from the knowledge that his obsession with his games consol may be normal and poss not that bad. I’m 31 and last year thought I might have a gaming addiction. When explaining to the doctor of all my issues and that I use Xbox to escape. My doc listened to my issues and said I could be autistic and that the gaming is ok. I then spent the next 5 months off sick from work relying on gaming to keep me relatively sane.
5 months later I was forced back to work(new job). This was january, and as of last month I was diagnosed with aspergers. Between January and now I wasn’t gaming as much due to work but last Monday I had a meltdown at work and have been off since
I have been on Xbox all day everyday and have been happy, today I had a break and unfortunately as I was not on console my thoughts and feelings, plus surrounding has resulted in another meltdown.
I’m hoping this may explain that maybe the real world is just too overwhelming for your boy and he needs to escape
I got to the end NAS3987! And I kept gasping at the similarities!! Although I guess it's natural to cling to those things which feel the same time o help us feel a little less alone - I'm hoping that you feel a little less alone now that you have read some similar experiences and som really helpful answers and ideas and explanations from the community. I hate the feeling of being de-skilled, don't you? That you think you know how to parent and then wham! Suddenly you don't and you get scared.... what if I do this wrong, what if my child barricades themselves in, self harms, becomes aggressive to etc and somehow you can end up feeling that you don't know anything....
i found the posts on this thread about "defence mode" very useful and telling as A says she only feels safe currently in bed - the house is also a safeish space. We are re referred to CAMHS and diagnosis postponed. One thing I'm learning is that it can work better if another respected family member (not myself or her dad) suggests she dos something.... eg she really needs to go back to GP so my eldest told her this at the weekend and she said she'd go and has now got an appointment.
The school has been so supportive and I fear I'm in danger of repeating myself but work hard to get them on your side. Is L in yr 10 now? A now isn't attending at all and I'm trying so hard not to be worried by this. We've had regular meetings with school and we're in no danger of being fined but I'm a teacher and in my had the law absolutely says she should be receiving education! She isn't in school and has done a minuscule amount at home... the school sent some from infpdividial teachers and wanted her to try to take it in after school one day so she didn't have to meet everyone - just a teacher. It may work but somehow any of our suggestions, encouragement, motivating or just plain old commands (veiled as "you need to..." ) send her into defiant mode. She will comply sometimes if she is allowed to just mull it over for a few days and then come to her own conclusion with put us trying to push her into a corner. Did that last week and said she couldn't see her friend if she didn't do some school work... sh didn't do any so we followed through - meaning that she became just that tad more isolated!
And the devices!! Oh my.... what to do about them? We want to have a rule of internet off at 11pm and no devices in room overnight but it's hard to manage especially as she seems to be playing a particular game over and over and over to try to keep anxiety at bay (she says..... but is she just controlling what we want to do re devices - arrrgh!!)
i think it is so good that L is still in school - you may need to think hard - with the school- about how to keep him there. If he doesn't do any at home would he be better to drop a subject or two and havE some private study time with a trusted teacher or in a safe space? I have been given some advice re how teachers can help girls with hfa and if there is a way to pm you I'll happily send it.
My 61 on my name is the birth year... same for you?
Take lots of care. It is such hard work. 14 is a horrible age to be anyway and yes... what is her asd (tho no diagnosis yet) and what is her being 14?!
One family member reminded me to look for the positives.... even with a child who is now an "emotional based school absence" person.... (better than school refuser I'm told.... not that weekends are full of joy and laughter!) so look for the positives...
is he drinking?
doing drugs?
running away/going missing?
sleeping around?
Stealing?
maybe he isn't doing one of these but he isn't going to school and that's a big positive. He is showing emotions (A isn't) and I think that's positive too.... there is some communication!
If he is academically able enough then he can do his gcse's in year 11 ( I used to teach in a pupil referral unit and could get them through English and English lit in one year) or later when he decides they're important. We worry so much for them but did my mum worrying about me being just plain lazy at school make any difference to me? No it didn't!! Did the thought of having to stay an extra year in 6th form as I couldn't go teaching OR nursing without my a levels motivate me .... yes it did! But that was me..... doing it for me.... and I then did gcse maths at evening class as I knew I needed it. I've had a good career and done post grad study.... but it has nothing to do with my mum pushing me into corners. I try to remember this when dealing with A - schools are forced to go on about targets so much and I fear it is damaging the mental health of teenagers....
now im rambling!
Karen