How to handle 14yr old daughter's school refusal and very low mood

Hi Karen, 

Well, as an autistic adult, that rings an awful lot of bells. Very like the way I presented as a teenager indeed. So from that perspective, this is the advice I would give to you re. your 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?

Not only possible, but quite common. Girls on the spectrum are usually very good at masking and get along very well in primary school when the social landscape is simple and the academic workload is light (especially for those of us who are very academically gifted).

Your daughter's love of drama (i.e. she obviously has some acting talent there) and the "coping...recharge"-cycle you describe in the second half of that first paragraph, the "playing a role with the counsellor". I am almost certain she is a very skilled autistic social-chameleon. She's got this far by mimicry, and she might not even be completely aware that's how she's been doing it. 

It is then the case that at some point the social surroundings get too complicated to "fake it" (puberty is very often a factor in this) and the academics become harder at the same time, causing that sudden "Oh actually I can't cope any more" situation and the associated meltdown.
Unfortunately being academically gifted can itself make this worse, as it is common to hit a wall when suddenly the need to do more than coast along becomes apparent; it can cause a real panic and often the study skills just haven't been learned.  

14 is the age I went to pieces too. I had horrific anxiety around school. I ended up self-harming, had to take over a month off (my doctor signed me off for depression) and was referred to CAMHS, where they noticed my autistic traits and assessed me. Like your daughter, the first time they thought I had traits but was on the borderline. When I was 17 and had my second breakdown situation that led to a re-referral, I saw a younger, more up-to-date assessor who said it was my sex getting in the way of me fitting the criteria the first time, and I was a textbook girl aspie after all.

Unfortunately even the professionals are still not necessarily well-informed enough about the way autism presents in women. It's been a "boy's condition" for a very long time, because of the way it presents differently and often far more subtly in females, those stereotypes are still very much ingrained in some people's minds when they think about autism.

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.....

Have you talked with the school about this? Are there particular lessons she just can't cope with that you could find a work-around for? I had a long period of not going to maths lessons; I would spend the time working in an office and my mum would do the teaching at home. I also refused to change schools, because as much as there were people there who made my life hell there were also friends who were the only people outside my family I really trusted and I really relied on them to help me navigate socially. The thought of being without that support was just unbearable.
I also often had extra "recharge day" absences, even before I was diagnosed. Mum just noticed that making me go to school anyway when I was looking like I was trying to skive made me really ill and exhausted, so in the end I would be allowed stay at home but have to do something vaguely educational (watching a documentary, reading or doing some schoolwork) if I wasn't literally in bed resting.

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.

It wouldn't surprise me if that was the case. It's often very hard for us to identify and articulate our own emotions, especially as children (look up 'alexithymia'). It is also the case that anxiety attacks and meltdowns can draw a lot of unwanted, even hostile, attention from other children at school. It's possible that she is scared of isolating herself or making herself a target if she happens to have one in a public place. CAMHS could help with this approaching it as an anxiety issue, even if they aren't ready to reassess for autism yet or you want to wait for the private diagnosis.

Poor or unusually patterned sleep is very common with autism. My also-aspie other half has never shaken this off; he'll often get out of bed when I come home from work and go to sleep again at around the same time I'm waking up. 
I have more-or-less conquered my body-clock, though I do sometimes end up drifting towards a night-owl sleep pattern when I'm not working (I'm in education, so long holidays).

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". 

I would not stop her going to drama, I expect that doing so would only isolate her further from her peers and definitely not be good for her mental health. If it's anxiety or exhaustion, and it sounds very much from your description like it is, punishing her for not going to school literally can't help her. She can't just magic up the fortitude to struggle through the mire of stress that is school. 

To a non-autistic child with a physical illness "If you're well enough to go out and play you're well enough to go to school" is reasonable.
If she is experiencing that much anxiety and energy-drainage from school, if it's a mental issue, it's more like saying "if you can walk across the living room you can run a marathon, so get to it". The two are just not comparable in terms of emotional workload.

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?

Again, this could be rooted in a difficulty to identify and articulate feelings. I find it MUCH easier to write my feelings than talk about them; it gives me extra time to think about my responses and make sure I'm not making mistakes.
A preference for conversation by text or phone could also be down to protecting herself from the confusing input that is the other party's body language and expressions, so making it easier for her to function in a conversation scenario. There's so much extra baggage that comes with a face-to-face interaction that non-autistic people don't even seem to realise is there, because it comes so naturally to them. To us though, it's like trying to have the conversation while the TV is on full volume right next to your ears, there's a small tornado in the room and someone is poking you with a sharp stick. Too many distractions, too much going on, the content of the conversation isn't getting a look in!
If text is easiest for her, text is absolutely ok. The important thing is that she is communicating with you which is good and very important. You're more likely to get a complete communication shut down, which is not good for anyone, than anything else by insisting on face-to-face. 

On "what can help";

I found CAMHS counselling very helpful at that age. I also have good things to say about CBT (cognitive behavioural therapy). 

The thing that really brought 14-year-old me back from that low, though, was going to a gifted and talented summer school focused on my special interest (biology). Being around other children I considered "like me" for a week (rather than the anti-intellectual and bullying peer group I was subjected to at school), having that bit of supported independence, being able to be socially successful on the trip, it completely restored my confidence.

To give an example, I went from "near-complete isolation and an almost phobic reaction to the prospect of interaction with strangers" to "spontaneously asking a shop assistant where I could find something when Mum and I were out and leading a song-and-dance routine with my friends in front of a class at school". My mum said it was like I came back a different child.

I don't know if there's anything similar going on next school-holiday that your daughter might want to be involved in. I suspect there is if the area of interest is drama. Worth a bit of research. 

Feel free to ask anything else you need to
You're definitely not alone.

Emma x

Emma - thank you so so much for your very detailed, helpful and reassuring response. I sent it to my husband to read and he sends his thanks too. It's very hard when she finds it tricky to understand what's going on and other people like to tell us she is just being an extremely difficult teenager. We know it's more but then the way she reacts makes you question yourself sometimes and you have explained really well how some things are manageable and others are insurmountable. 

Where we live the GP doesn't diagnose depression or do medical notes for children tho she is really great and supportive. CAMHS say she doesn't meet threshold tho GP and school willingnto try again. It's up to us to decide if she is fit for school or not. I wonder how she'd react if we said she wasn't to go for two weeks... or until after the assessment even... would we see more if her strengths and character and hear more knowledge about movies and her other interests? Would she become less anxious/ more relaxed or become anxious about not seeing friends? Her main friend is actually at a different school as it happens. 

Im sure I'll be back to ask some more if you really don't mind.... the way you described what may be happening for her makes such sense. Like the idea of a special week.... will look out for something.

Karen 

Emma - thank you so so much for your very detailed, helpful and reassuring response. I sent it to my husband to read and he sends his thanks too. It's very hard when she finds it tricky to understand what's going on and other people like to tell us she is just being an extremely difficult teenager. We know it's more but then the way she reacts makes you question yourself sometimes and you have explained really well how some things are manageable and others are insurmountable. 

Where we live the GP doesn't diagnose depression or do medical notes for children tho she is really great and supportive. CAMHS say she doesn't meet threshold tho GP and school willingnto try again. It's up to us to decide if she is fit for school or not. I wonder how she'd react if we said she wasn't to go for two weeks... or until after the assessment even... would we see more if her strengths and character and hear more knowledge about movies and her other interests? Would she become less anxious/ more relaxed or become anxious about not seeing friends? Her main friend is actually at a different school as it happens. 

Im sure I'll be back to ask some more if you really don't mind.... the way you described what may be happening for her makes such sense. Like the idea of a special week.... will look out for something.

Karen 

No worries, 

As a final point, I would advise to go cautiously with dosing when it comes to the anti-anxiety meds. I've had diazepam for this purpose before and found it really helpful, but I am hypersensitive to it and even the low dose tablets knock me right out.

I am pretty much completely unaffected by SSRI antidepressants, on the other hand, so when I was given those as a teenager I got no benefit, just unpleasant side-effects. 

From what I've seen on this forum, this variation in psych-med sensitivity is not uncommon in the ASD community. 

Hope it was a good trip Emma. We may now be caught in a bit of a catch 22 but hopefully it will signal the beginning of the journey to a better place for A. The assessment Centre feel she may not be in best place for neurological assessment and that we should maybe access CAMHS first if we can....  I do understand what they're saying and the more I think about it the more it makes sense. Just tricky as we have no referral in for CAMHS even at the moment tho school and GP probably willing to re-refer and I was pleased we had the assessment set up. A bit of a wait and see time and I'm rubbish at that!  The Centre did explain, like Trogluddite and yourself, that her behaviour is very typical of high functioning asd but that she needs to manage a whole day of interaction and could she currently do that. She needs to sort a few things first like anti anxiety meds (so she must go to gp) and try to re establish a better sleep pattern. Valid points. Now the hard bit - getting he to see these points and choose to start helping herself a bit - with our support of course. 

Signing off for now - but will be back once things a bit clearer to update. Thank you so much for all your advice and knowledge,

Karen 

Sorry I haven't replied earlier; been off the grid for a few days- residential trip with work. Troggluddite has said it all there, I think. :) 

Penny18 said:

she would lose sometimes several minutes of awareness, but without fainting or any other physically visible signs

Penny18 said:

This sounds a bit like sleep paralysis?

I would certainly look into the possibility of disturbed sleep; sleep disorders such as insomnia, sleep-paralysis etc. are very common for autistic people (a recent study by Autistica suggested up to 60% of us). The lapses of awareness could be what is called micro-sleeps, which are common for insomniacs.

Another possibility could be dissociation, where our brain's perception of reality becomes less clear. It can seem as if the world around us is just a movie that we're watching, or that we're inside a computer game; that the world isn't quite "real" (derealisation). I have times where I even completely lose contact with my own body; nothing really seems to exist but the thoughts that I'm lost in, or my mind feels entirely blank (depersonalisation). From the outside, these can look a little like a "petit mal" epileptic seizure; the person becomes frozen, like a shop mannequin. I never have any sense of the passage of time when I'm in these states, either. I imagine that they're much like shut-downs, except that it's much deeper brain functions that are shutting down.

P.S.) Be careful not to overload yourself with all this new information! It is a lot to take in, so be patient and take a methodical approach to honing in on the correct explanation for your daughter.

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

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,

Karen 

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

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

Glad it was helpful for you both Karen! 

It's hard to say which way she would react to an extended break, I know I found it helpful but I was also initially anxious about being separated from my friends for that time. All you can do is suggest it to her and trust her instincts. 

Having read your response below as well, I wonder if a reduced timetable arrangement would help ease a little of the pressure without completely giving up school for an extended period. Schools are often willing to try this in cases where there is a need; a good handful of the children where I work are on a similar half-day schedule for a variety of reasons.

She could then start at school later in the day (e.g. she could arrive just after breaktime) and you could go over things she might be missing earlier when she gets home in the evening. Less exposure to school stress and better suited to her natural sleep schedule.

You're always welcome to ask more my PMs are open if it's easier for you to communicate that way than posting on the public forum. 

Hope you find something that works well for you all.