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,
This is really helpful, thanks Trogluddite! I hadn't heard of shutdowns before, but know that M can react like this to sensory overload. It can affect her ability to understand others' speech - she can hear the words but not make sense of what's being said; she can also appear confused and garbled, like she's trying to speak but can't access the words. She too says the words are in her head, but she just can't say them.
M also used to report 'zoning out' in lessons (less so now that she's not at school full time) when she would lose sometimes several minutes of awareness, but without fainting or any other physically visible signs - she'd just become aware that time had moved on and she had missed out on some information or instruction in the lesson, and didn't know what was going on. She finds that pretty scary. I guess that was a shutdown too?
M needs at least an hour after being at school to wind down, best done in her darkened room with a blanket wrapped around her and a cat to cuddle! We're learning not to ask anything of her at all during this time. She's then sometimes able to face doing something constructive (school work, creative hobby, exercise).
Karen61 said:Also that she has woken and felt properly physically unable to move even tho she can sometimes hear us or be aware she is awake....
This sounds a bit like sleep paralysis? I've had this myself a few times, my sister-in-law used to get it regularly when she was a teenager. Not sure of the exact science, but it happens when your sleep cycles are disrupted and you become conscious during a period when your body is still physically asleep - often happens as you are waking up. Many people who have this also report having very real-feeling hallucinations - when I've had it I've had the sensation of a weight on my chest that's preventing me from breathing. It's really frightening, but usually only lasts 30 seconds or so. it can affect anyone, not just people with ASD.
Karen61 said:... just curious as to whether others have ever heard of this?
Oh yes, it sounds like what is sometimes called a "shut-down", and is experienced by a lot of autistic people.
Our brains are often extremely over-worked from trying to mask our autistic traits, our senses being bombarded by too much information, and endless analysis of situations that we don't quite understand. Having accepted this as "normal" for us since infancy, and with a strong desire to fit in with other people, it's easy for us to push things too far; and, eventually, parts of our brain just turn themselves off - they're going to get some rest whether we like it or not!
My own shut-downs often affect my language skills first; it's probably the part of my brain which has to work hardest when I'm interacting with people. It isn't necessarily the ability to produce speech which is lost, but sometimes ability with language in general; I sometimes cannot think straight because I'm unable to use words even inside my own head. But we can lose access to just about any skill or memory, or in extreme circumstances shut-down completely, becoming essentially catatonic.
Being so much less dramatic that the more commonly known "melt-downs", shut-downs are much less well publicised and understood, and easier to hide, but the mechanism behind them is much the same; an extreme response to being overloaded and overwhelmed. Some autistic people tend to have one or the other predominantly; for others, it depends on what triggered the overloading.
The phrase "prevention is better than cure" is key to managing shut-downs and melt-downs; once they are happening, there is nothing do be done except to remove ourselves from the world and give our brain the rest that it desperately needs. Managing stress and anxiety is vital to avoiding them. Spotting the early warning signs so that I can take breathers now and then, rest time set aside after work/school, and anxiety management techniques (including possibly medication and/or counselling), have all helped me to reduce my shut-downs, and it is a very long time now since I had a full-blown melt-down.
Some training in assertiveness can also help; we need to feel OK with asking for the accommodations that we might need. I often used to force myself to sit through overwhelming social situations because of my worries about how it would appear to other people. But it's much better in the long run to say; "sorry, my brain's a bit fried, I'm going to take a little time-out", so that the pressure doesn't build and make us unable to participate at all. Feeling able to let our mask down in general, or at least having a "sanctuary" where we can do that, will also help enormously.
You might find this article about shut-downs useful; not all of it will apply to your daughter, but it gives a good insight into how variable shut-downs can be.
Emma and Anyone else who might know the answer. When A is very tired she has told us it's really difficult to speak - that her brain forms the words but then she can't actually say them - and we've certainly heard her stutter more when tired (she doesn't usually at all". Also that she has woken and felt properly physically unable to move even tho she can sometimes hear us or be aware she is awake.... just curious as to whether others have ever heard of this?
Must get going on the day now.... hope you all have a good one
Thanks for taking the trouble to join the conversation Sassysan... it really is helping me to have others sharing their experiences. I'm interested in your comment about PDA. I've always been taught through my work (an outreach teacher for children with SEND) that it was very rare and, I guess because of the word "pathological" there from birth - in fact we have a relative diagnosed with it aged 6. But Amy was very compliant up until March of this year.... now she seems to need to have the control which yes, matches aspects of PDA, but can it appear later on in life? I would have expected to see more when she was you her to be honest. Although the website may well have good ideas, like yours about choice, which could help us through this really tricky time. The only thing is she is finding choice difficult... but we may be giving two manny repather than "this or this"! I'm going to take a look.
I was heartened to see that she is going ahead with GCSEs - did she school refuse for a while and then go back or kept getting there despite it all?
Karen
Thank you for taking time out to contribute to the conversation. I wonder if GPS ever do home visits nowadays - they used to in the 60s when I was little and my mum was poorly with bronchitis! Imagine if she came and A refused to see her tho..... she's a very understanding GP so may be worth thinking about. I was cheered to hear that you did return and did some exams - well done on that! What did your "falling off the grid look like? I realise you may prefer not to say but are things better for you now?
i feel so less isolated since coming on here....
A managed to get up Saturday to go to a village event with two of her old friends from primary school and her boyfriend whom she suggests is a bit "weird" tho I prefer wired... like her. Think she had a good day and, as you say Emma, she was with people she had known since she was 5 and her boyfriend.. with whom she had a long friendship before they decided to "go out" together.... except they rarely go out but have long chats on social media instead. I don't know if she masked, but she was very tired yesterday after the effort. She told her dad last night that she just doesn't want to go to school.... now to a NT parent that could sound unreasonable in the "but you have to go to school - it's the law... you don't get to choose whether you want to or not"!! But I'm trying hard to look at the statement as being about not feeling able to manage at school, despite all the reasonable adjustments. I had a moment on Saturday when I realised I might find it hard if she met any of her teachers or other peers who know she's not in school but then see her seemingly happily enjoying herself with friends at a village event... but I fought the feeling and decided I was pleased my girl was getting out there into the world for a day at least.
She met her primary Headteacher and gave her a massive hug apparently... then later asked if she could ask her to write something for the assessment for HFA.. interesting.
She shares the feelings of just wishing she wasn't here, that we had made a different decision when we learned I was surprisingly pregnant at 42. She also has stated she would never have the guts to kill herself and even finds the idea of cutting herself too much to contemplate but just doesn't want to wake up "sleeping is the best part of my day".
I think I'm just rambling!! Thanks for your thoughts. I will certainly try to look for some online stuff she could try if she feels motivated enough. It may be that she needs to gradually realise for herself that something needs to change - but I hate the waiting game. I think she is moving further from returning to her large mainstream school and we may be thinking if a different educational experience for her.
you two give me such hope because you've been there, done that (I have a book called "been there, done that, try this" about coping with the different issues people with hfa face... written by people with hfa - have you seen it? Amy won't touch it which is a shame - I had it for my work but I think she'd feel less alone if she read it occasionally. Anyway - yes, you give me hope as you are adults who are managing and independent and that's what I want for her.
thank you,
OMG! Look on the Pathalogical Demand Avoidance website.
Sounds like you have my 15 old daughter’s twin in your house. Ditto on most aspects but she also cut herself and successfully hid it from us. Only discovered when in A & E after a suicide attempt.
We now have a diagnosis and things are improving slowly. Might even reach those 8 targets at end of year when she sits het GCSEs.
Good luck with the diagnosis.
x
This is such an interesting and helpful discussion Emma and Trogluddite. Especially for an NT mum. It makes sense and resonates. Will reply longer later.
I think you definitely have a good point there, Trogluddite. I do let my mask down, and that definitely does help with the experience of fun. My most fun times were always when I felt I wasn't having to mask.In my early-mid teens, when it was just me and my best friend, or my also aspie then-boyfriend (whom I could not-mask around without any negative reaction). In my late teens/v.early twenties, it was when I was off-my-face drunk and so was everyone else around me, so I didn't think to mask and nobody really noticed. This, as you can imagine, didn't end well.More recently, I've turned the masking off almost full-time (I have worked out what the boundaries are at work having told everyone I'm autistic and usually maintain low-level control there), and it does seem like there's a lot more enjoyment to be had out of life now.
Excellent post, Emma, every word matches my own experience, going right back to childhood. At some very extreme points in my life, I have been suicidal, but that general sense of preferring that I'd never existed at all has always been with me for as long as I can remember. I rarely go to bed with enthusiasm for the following day, I just think; "if I never wake up again, so what?"; not destructive thoughts, just complete ennui.
I wonder whether some of this has to do with all that thinking we have to do in order to get the social rules right. I have never really understood the idea of "fun". I can tell when other people are having "fun", but socially, I can't let my hair down enough to be "in the moment"; there's always that anxiety from masking at the back of my mind. I think this maybe leads to a kind of anhedonia (inability to experience pleasure); when there are good times, we just don't experience them as viscerally as other people, so we get less positive feelings in our lives to offset the negative ones. I'm convinced that feeling able to let our masks down is the key to this problem.
Karen61 Existential depression, I've never thought about it in those words but it does strike a chord. I definitely remember wishing I did not exist because I struggled with the whole "general concept of existence, knowing my own mortality, everyone will inevitably experience death" thing, and because I was simultaneously so very depressed because of the dreadful time I was having at school. My thought process was that if I hadn't ever existed I wouldn't have had to think about it, that ending my own life was too scary but that I knew I didn't want to continue being. I would just end up furious at the unfairness that was the fact that that I had been born at all. I still have that tendency to ruminate on the inevitability of my own death, and the tendency to think not existing at all would have been an easier option, but I'm much better at pushing past those feelings as an adult. I also did a lot of, as you put it, 'overthinking' when I was a child. Not just in a philosophical context, I would overanalyse anything and everything. Again, that's something I've carried over into adulthood.I think it's possible that there's a combination of intellect, very logical thinking and necessity (the whole 'learning to mask' thing) in the aspergers profile that means we get very good at analysing the world around us and then can't switch it off when it takes us to distressing places. It's not officially part of the profile as far as I'm aware, though. It could well just be that your daughter and I are both very highly strung that way (for my part my whole family is; autistic or not, none of us are lacking neuroticism as a personality trait). This is one of the things CBT did help me with, getting control over those particular disturbing and pervasive thoughts. I wonder if she would feel happier doing the online, on her own version rather than seeing a counsellor (which she has already associated with failure and stress). I used a website called MoodGym, which was free at the time but has annoyingly implemented a subscription fee since my day. I do know that ones specifically aimed towards teenagers exist now though, some with accompanying modules for the parents. If she wants to try it it's a road she could go down at her own pace.I hope that helps and that A finds it in her to start caring again as soon as possible- I don't doubt that she will. x
When I read your original post that describes my childhood school experience. Mine didnt go so well after the age of 14, not to mention the fact my parents didnt really get it. If you can get her to stay in school or at least cointinuing to learn, it would be best. In my case i essentially dropped out at 14 and returned briefly to do my GCSE's, got passes in English and Science, then fell off the grid for a couple of years. My parents had me see a psychologist for a year and that was helpful, but at the start of it I was a mess and resisted it as much as possible. With time it helped a fair bit and gave me a band aid for my problems, at least until I got out of school.
Is their any chance of getting the GP to her? A home visit while unorthodox should be easily arranged with most GP surgeries. If you have an understanding doctor it may be the way to get her seen and maybe something short term prescribed to deal with the anxiety. Although this may add in a fair bit of extra stress to the current situation.
Emma - keep re reading your reply to me as so helpful. Please could you read my last reply to Penny further down about existential thinking - A feels she has existential depression? Do you recall really struggling to find a purpose or meaning to life? I'm not sure it fits with hfa but I know that every person with asd is an individual with their own traits. I remember thinking about life at her age but not to the extent that she says she doesn't care about anything (not quite true - she does but it takes effort and she is isolating herself more and more) and it's not "about school" but about life. She wishes she could be young again.
I so so hope we find a way into her world soon and that she will let people help - she currently says she doesn't want to be helped - hard times for parents!
Karen x
Thank you Penny. A seems to be struggling a lot with the meaning of life - finding a purpose. She keeps telling me that it isn't about school - she feels she has "existential depression" and just doesn't see any point to anything at the moment - she's known for her overthinking and for philosophical thinking... but it seems to be really dragging her down and I have no idea how to get her to participate in life on a day to day basis.
We know we need help to know how best to help our smart, caring, funny, creative daughter but it's a bit of a waiting game I guess. Wish I could get her to GP. I'll have a think about that over the weekend! I'll try to get her to look at the black dog videos. I'd love to hug her but it's a special occasion when she can tolerate that amount of touch - but she did lean on me when watching s film the other night which was lovely!
Would like to keep in touch.
Take care,
Hi Sue,
Gosh... I'm not sure whether to feel a bit relieved that there are others on this very tough journey or really sad that something seems to switch on or maybe off in teenage girls with hfa at age 13 or 14 meaning that lots of us face really tricky times. But how good to hear from Emma and Trogluddite - adults who have been through it and - here's the really good bit - come out the other side and are living their lives and helping others - like me - to understand and to support our children.
I'm really quite torn about the whole home schooling debate. I would feel able to do it and have family who think it's a good idea and family who don't! I have friends who have offered gcse science and art and even Latin and I'm qualified for English and my eldest daughter and husband for maths so we could cover the main bases between us BUT A has stated that she doesn't care About learning at all right now so home ed is unlikely to be much different and she is adamant she wants to stay at her school and not be taken out.... even as she doesn't attend! We're intending to meet with the school, probably without her first time, to see what the options are. Then put them to her and if she can't or won't choose we'll need to choose for her. It is very difficult for teenagers to choose sometimes and I think they need us, as parents, to make tough decisions on occasions. I remember times in my life when I have wanted to stay in a place ... job or relationship... as I didn't know what an alternative could look like, but when given permission to leave felt an enormous weight lift from my shoulders. It's very tricky. Not helped by trying to decide if we make everything worse for her by trying to insist on school. We have discovered, as maybe you already know, that whatever a school asks for GPs don't write medical fitness notes for teenagers. It is up to the parents to declare child fit or otherwise for school. That was a real eye opened after often hearing achools trying to insist on medical notes .... as part of my work!
So currently we are trying to do at least one activity in the evening... last night we all wrote poetry and the night before did some geography quizzes, tonight we are having some art time and it was interesting that she spoke of trying to do some of her art homework as the activity but then became really quite anxious as she's so far behind... which means she can't face any of it.
Ive even started adding it up..... two evenings at drama, two hours geography and over an hour writing poetry, one hour discussing Trump and there.... nearly two days worth of education!!
i really feel for you re work. I'm so lucky not to be in that difficult position. A local friend, also in health service, did just have to leave daughter at home whilst she worked. She managed to get her back at her old primary school in the afternoons to help with reading etc. I hope you will feel safe enough to leave her ... maybe you can go back part time for a while?
Take care... I just hate the waiting don't you? Had good evening with A and watched a film, mind her body clock is so out of synchs that we were watching after midnight... but it was really good to spend relaxed time with her.
Hi Karen, have edited my reply, sorry about that!
It must be so exhausting for you to have gone through this for such a long time. We also had 'I'm a failure if I drop subjects' for a while, but I think she's come to terms with that now. We keep telling her she's a warrior, that she's done so well despite all her challenges. Coming to terms with possible ASD was hard for her to begin with, but then the prospect of a diagnosis seemed to help. Getting the SPD diagnosis was certainly helpful, as it explains why she finds everything so hard. One of her big fears now is that she won't get diagnosed at the ADOS, but I think that's unlikely.
As to M's depression, we think it was the prolonged anxiety that caused it, and by reducing that anxiety, the depression is easing. It's still a bit of a roller coaster ride, with more downs than ups - but the ups are getting more frequent over time. Keeping a diary of her mood helped, as we were able to see small improvements, track things that have helped, and identify situations that have caused anxiety.
We've also recently found out about Pathological Demand Avoidance, which we think we may have a problem with. So we give her as much choice as possible. To get her into school we have a rewards system - when she goes to a certain number of lessons she gets one of the models she likes to collect. It works a bit!
Some things that have helped us: planning small things to look forward to and comedy programmes on TV (if you can get her to watch). Exercise - that was a big challenge for us for months (initially when she wouldn't leave her room we put an exercise bike in there!) but now she will go out for a walk, go swimming, play badminton and go to the gym and we're noticing a big improvement. When something didn't work, we just kept trying with something else. One thing we found is that M didn't enjoy activities, like baking, that she had enjoyed before she got depressed, so trying totally new activities helps. It has been exhausting though!
It must be really hard for you if you can't talk with her easily face to face - but at least she'll communicate with you by text. I think keeping that line of communication open is really important. We're lucky that M will confide in us but I know sometimes she keeps things to herself if she thinks it will upset us. We're learning that we can't fix it (which is really hard) and sometimes she just needs a hug or to be left alone. We found the Black Dog videos really helpful (Google 'Living with a black dog') and keep telling ourselves 'it will pass." It helps a little! Seeing them not accessing any help is so hard too - M also tried counselling for a while but it became just another source of anxiety so she stopped going.
I really hope things improve for you x
Hi Penny,
Really good to hear from you.... I had meant to leave A's name out of it but see I slipped up! I'll try to edit mine - apparently you can if you use the more button at the bottom - would you mind doing the same please - so sorry to be a nuisance but I'd rather it that way.
Wow! Yes, our stories have many similarities - we're finding it so very very hard at the moment as she isn't even wanting to find a way to any sort of education just now. We, like you, are perfectly happy that she might only get 5 gcse passes rather than a stack of 8s - I've been a teacher all my life with a good career but only got 5 passes to begin with! I also know she can take her time and can do all this later... that's OK with us too. What we are really struggling with is her very low mood/ depression. How to motivate her to even get up or draw the curtains.... maybe a re referral to CAMHS but would this not be a good move with private assessment coming up.... but that's not til November - eek! I'm going to try hard to get her up for 2pm each day and take her out somewhere - I've found an art thing for today so cross everything for me.
School very keen to support and I am hoping they might look at very reduc d timetable for now too - in fact they're not really the problem in that they've said she can just turn up at lunch to see her friends or just go to art catch up after school.... it's her that we can't motivate and it seems to have happened relatively quickly. It's really horrible. She doesn't get up at weekends either tho we have planned two things she hasnt said no to this weekend and she is prob going to do at least one of them. At least she'll get up for drama tonight. She also plays guitar but has stopped that. She loves art but hasn't done any. She makes lists of all she should do but of course they're too long - we can't get her to see that reducing stress by reducing subject s etc is the way forward as she feels she's failing .....
my husband and I have really good strong marriage with large family (second marriage and older parents so family all independents and grandchildren in mix too) but we're finding this so tough. I went to work - as Outreach teacher to help support school struggling with pupils with SEND lol - yesterday and it was lovely to be out and about. Semi retired so home quite a lot which really seems to bug her too due to noises in the house.... "wish I could live alone" etc.
I know we need to keep sane ourselves. It's hard to see her so down and not accessing support - GP so helpful too and says to tell her she can phone and make an appointment for same day when she's ready.
so sad and tired
but really being helped by this wonderful community, thank you
Hi, my first time on this forum too - I've had to join after reading your post! We have a lot in common!
You have described almost exactly the situation we were in with our 15-year old daughter (now year 11) this time last year. M has always found school very difficult, but has always achieved academically (predicted all 8s at GCSE) and was that child at the back of the class who sat quietly, got all their work done to a high standard and never caused any trouble. But as soon she got home she was exhausted, often tearful.
Well, last October - at the beginning of Y10 and the dreaded GCSEs - she couldn't cope any more. She became more and more anxious, started having panic attacks, and became very depressed. She took two weeks off school and was referred to CAMHS - they confirmed our belief that she was on the spectrum, and we're now near the end of the ASD diagnostic process. Her final ADOS assessment is in two weeks.
M has displayed a classic case of masking as often seen in HFA girls. As Trogluddite said, the added academic pressure of GCSEs (and boy do they lay it on at our school!) along with the changes that come along with puberty - especially around social interactions - sent her over the edge. M has Sensory Processing Disorder (quite common in people with ASD) so the school environment is too loud, bright, hot and busy to start with. And then her friends have suddenly 'grown up' and started talking about things she doesn't feel comfortable with (sex, parties etc) and she has begun to feel 'different' from them and quite isolated, even when she's with her friends at school. One of the things she says a lot is "I just want to be a child again, when everything was easy".
I don't have any answers on how to deal with this - my husband and I are still feeling our way through what has probably been the most challenging year of our lives. Emma has given some excellent answers which were really useful (thank you Emma!) I would add to trust your instincts for what is right for your daughter - even if that means you're having to let go of any parenting ideals you had before.
We were lucky in that we were referred to CAMHS relatively quickly and that M's school was very understanding and have allowed us to pursue a flexible approach to her education. After her initial two weeks off, she returned to school on a drastically reduced timetable. We knew that school was the major source of her anxiety, and it was tempting to pull her out altogether - we're both self-employed, so we could manage this - but we were worried about her becoming even more isolated and withdrawn. And we wanted to normalise going to school, whilst reducing her anxiety as much as possible.
So now M goes into school for Maths and English. We teach her the sciences, History and PRS at home. The original idea last year was to gradually increase her time at school, back to a nearly full-time timetable, but we now know that's very unlikely for us.
So one possibility, if your school will play ball, is to identify the lessons that cause your daughter most distress, and take these out of the timetable, for now at least. It could be that just having an extra hour or two to wind down each day will get her through this difficult time.
One of the hardest things we had to do was let go of the idea that M would get 10 8s at GCSE. And one of the most useful things our CAMHS caseworker said to us was "What's the use of 10 GCSEs if she's so anxious that she can't get on a bus?" She only needs 5 passes to get onto the next stage (A levels or college) - and at this point we'll be very happy with that! Another useful piece of advice we were given is that M doesn't have to follow the same timetable as everyone else - so it might take longer for her to get the qualifications she needs, but she will get there eventually.
I would definitely let her keep going to the drama club. It will stop her from becoming isolated if she needs more time off school. In fact it's the creative things that have kept M's depression at bay - she has taught herself to play guitar, writes songs and stories, draws, and makes models out of Fimo that she sells at a local craft fair. These activities are therapeutic - and any little thing that brings her some joy is worth its weight in gold.
I know that seeing your daughter like this is absolutely heartbreaking. Try to take one day at a time, take the small joys in life when they come along and try, if at all possible, to take some time for yourself! I have found that practising mindfulness, and trying to keep some emotional distance between myself and my daughter's pain (while still being there for her) have helped me to keep myself afloat - and so be stronger to help her when she needs it.
Penny x
Hi our situation is almost identical. M who is 13 nearly 14 has always had behaviours that have concerned us such as anxiety, lack of close friends, afraid of change etc. Her anxiety levels shot up though about 8 months ago which and she started to refuse to go to school. This started as just Monday but then eventually escalated to total school refusal. She hasn't now been to school for the last 7 weeks excluding the summer holidays. She can't tell us why school provokes such high anxiety and all the obvious possible causes have been excluded. During this period of time it gradually dawned on us the this might be ASD. She was referred to CAMHS but refused to attend the appointment! The conclusion is that this is likely ASD and we are waiting for a home visit for an initial assessment. The full assessment waiting list though is apparently months.M also has a passion which is riding and we also have struggled with her eagerness to continue this whilst school refusing. Our conclusion was that this is where she feels included, it contributes to her self esteem and allows her mix with girls her own age. We are at a loss what to do next. We're waiting for the CAMHS appointment in October and are coming to the realisation that it may be a long time if ever that we get her back into mainstream education. Home schooling unfortunately isn't an option because we both work full time and can't afford to reduce hours or give up work. I'm taking a few weeks off to support M but cannot see where we go from here. I need to be at work but how can I just go back to work and leave her. Puberty seems to have been the trigger to the exacerbation of her symptoms and probably because she couldn't maintain the masking. We have considered a private assessment but have been told that the local LEA won't recognise this with regards to EHCP etc.
Thank you Trogluddite - honestly this forum is so so helpful and reassuring and I'm wondering why I didn't access it ages ago! She is really struggling with thinking about a future at all and your suggestions about why that might be ring true. I had begun to be a bit interested in the fact that she is needing/liking (I prefer needing!) to be in control at the moment and you have pointed me towards an explanation. In my work I have come across children diagnosed with PDA and whilst I honestly know that she doesn't have that form of autism I've been interested in how much more she tries to control the home environment at the moment whilst everything else seems so tricky for her. She still manages routines that have been "set in stone" since she was little eg we eat evening meal together at the table - but now I swear on the bad days she must just switch into role as she can have been curled up under bedding, door closed, curtains drawn, no lights on all day then we give the 10 minute and 5 minute warning and she arrives, yes undressed and unwashed on bad days... but she sits and eats and tried hard to make conversation.... then disappears at the first opportunity back upstairs.
Your comments about the social life at school also resonate.... she has not been as keen to see her friends and told me that two of them are arguing at the moment and have tried to involve her and "it's all too much". Her friends aren't the "solid" friends she had in childhood... maybe one of them is closer to this, but she found it very hard to fit in and has eventually become part of an "emo" group... she went out with them once or twice but doesn't now. I remember her telling me that although she joins in and swears with them in school and can be loud with them at school she never imagined for a moment they would be the same in the cinema/ at a restaurant and she felt really uncomfortable. Eg we always taught her to put popcorn bucket in bin on way out and they just left it all over floor... she didn't and got very teased for this. A silly example but it led to a parent compliment "you always told me manners were important and I never realised why but I didn't like how they behaved in the restaurant and the waiter came over..." I think they are a group to be with so she's not alone but they can be very tiring at times. She makes very little effort to go out with them outside school and refused a couple of invites over the summer. She has develop d her own style mind and wears very distinctive make up which I maybe wouldn't have expected as I keep reading that girls with hfa seem younger than their peers - that doesn't ring true exactly tho she keeps wishing she could be back as a child as it was so much easier then. Maybe the dress style (emo - black and white - she looks good in it) and make up etc is hard work too.... I know she has deliberately made herself wear uncomfy clothes, up until aged 14 it was the same pair of leggings from Hand M - we've had them from age 3 to age 14!!
Oops... must get ready for work. Thank you again. One thing more - She says she is worried about the assessment as she knows lots about hfa and is maybe exaggerating in order to be diagnosed, she is worried about being honest on the day. I've said Lorna Wing best in country in my opinion and will be able to seek what's really happening and not to worry. Part of her is really worried she won't be diagnosed as then "I won't know why I'm w"weird"!
Thanks everyone.... this is helping me a lot. You're all stars!