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

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!

Hi NAS39425, so sorry you're having to deal with education system worries alongside everything else. As Suzanne says above though (sorry if I've put this reply in the wrong place!) this does sound wrong - and I really hope it is as we are planning something similar for our daughter! She is in year 11 too and we're hoping to 'get her through' GCSEs, then take a year out to 'recover' and decide what to do next - possibly either A levels or college.

When M first crashed last year, she had about 3 weeks off school (actually 5 away from school, as it ran into Christmas holidays). In the new year we reduced her subjects right down - maths and english at school, and we're spending about 30 mins a day (all she can cope with after being in school) on the sciences. That way we are managing to keep her in school. It doesn't always work, there are still some weeks when she doesn't get into school at all. But we're hoping she will come out with the 5 passes she needs to move on - assuming of course that she can make it into the actual exams!

Anxiety is one of our main stumbling blocks. We have found that giving her plenty of down time, and reducing virtually all expectations and demands, has brought her back from a place where, last year, she could barely leave her room. 

It sounds like your school might be quite supportive - our school has been fantastic (so far - just had a new headteacher and I'm  constantly worried this will change.) Our CAMHS folks have also been amazing. We have a special school nearby us that's ideal for hfa kids, but CAMHS advised us not to go down the EHCP route, as if M got a place she would have to be in school full time - and they say that M wouldn't cope with that, and we agree. CAMHS arranged a meeting with school and us to agree M's reduced timetable for Y11, which was helpful as school had begun to push a little on increasing her hours. We've now all agreed the maths/english with homeschooling for other subjects is the best way to go. If she's in for more than that she could crash again and will come out with nothing - I think school are sensible enough to realise that.

We were really worried the minimal and often non-existent schooling would mean M won't get the passes she needs. But - possibly beacause of her autism? - she has an amazing memory. I did some science past papers with her and she could remember stuff from way back - when I marked them she came out with 6s and 7s. So we're hopeful she'll be okay!

Sorry if this doesn't answer your question, but hope it helps a little. Letting go of the 8s at GCSE expectations was one of the first and most helpful things we did. We're confident once she's over this very difficult period M will find her way and shine - but that can't happen for her in a conventional educational set up, or to a conventional 'life goals' timetable. She will need time, and plenty of it.

Take care

Penny

Hi again Karen,
Never feel cheeky asking! It's what we're here for.

My partner is on the same sleep schedule, it's not at all uncommon in autism for precisely the reasons your daughter has given.
He does need to break out of it sometimes though if he has somewhere to be at a certain time (he does occasional voluntary work that requires travel) and will usually do so by staying up an extra couple of hours at a time over the course of a week and setting his alarm the appropriate amount of time earlier as he goes to "fix" it before the event.

I would recommend her getting back onto daytime-ish by that method if she can, even lunchtime wake-up if that would work for her, just because sunlight deprivation can have a negative effect on mental health (always does me if I let my schedule slip too much over school holidays). 
It will also make it easier for her to attend activities on the days she does feel able to.

Now that's not going to be possible unless you deal with the root causes of the sleep pattern she's chosen, namely the noise of the house and her anxiety.



Re. sound sensitivity;
I am quite similar to A with the noises of a busy household and completely understand where she is coming from. I loathe the everyday bustle of a full house. 
The thing that really helps me is the habitual use of earplugs or headphones (playing music that encourages a relaxed or slightly-hyper mood depending on what I need to get done; my state of mind is very easily affected by music so I have several "mood-altering playlists" set up for the purpose). 
Depending on what is comfortable for A, she could try ear defenders (Pros; nothing inside the ear, Cons; bulky and a bit heavy) or foam earplugs (the opposite; very light and unobtrusive but you may need to look around to find some that feel comfy as they go inside the ear). I favour the latter, boots do some very comfortable green ones that I also use to keep water out of my ears when swimming/bathing.

Re. anxiety;
Keep the pressure off, she is obviously very worried about being asked to do things she can't cope with, which is understandable. When you can't physically cope with doing something you know you should do, having someone reminding you of it just makes the feeling worse.
She will need time to adapt to the idea that she isn't going to be suddenly asked to do things,
Framing unavoidable requests to give her an out (do you think you could X?) and not expecting her to do things at the moment of asking (giving her time to build up to it) should help too. 



The timetable idea is a very good one! To-do lists got me through university. I would advise you to continue with that, we like timetables as a general rule. :)



You're exactly right re. not being able to access her abilities as opposed to them being lost, keep re-iterating that. It's hard to see the possibility of recovery when you're depressed, I think that's the worst thing about it. It did get easier for me with age, as I recognised that I did always come out the other side. I still have phases of depression, but it tends to be a week or so rather than a year at a time now. Telling her that may help or it may not. I wonder if it would help her to read/hear about the experiences of others in similar situations. That's very dependent on her state of mind and personality, you'd have to ask her.
I expect you already are, but tell her she absolutely doesn't need to 'fix' ALL the things straight away. Baby steps are the way to go, try to help her not to expect too much from herself too soon. She'll be more stable for recovering at a steady pace.



A slightly unusual final idea based on my own experience, feel free to reject it if it doesn't work for you, but how does A react to animals?
When I feel I simply have no energy to do something vital (wash my clothes, cook my food, etc.) I'm often seen with one of my snakes on my shoulders. Having them there to focus on just gives me access to that extra little energy reserve.

I also always found animals much easier to interact with than people (they don't expect much from you re. social fluff), so having them around meant company and comfort I could cope with even in my lowest times. Mum got my brother and I a pair of kittens partly to help me through a very bad depression I went through just after I was first flagged up as autistic, having them helped improve my mood enormously. Being (partly) responsible for them made me feel more confident and capable, cat-cuddles made me happy. Win-win.

The third thing my animals do is ease me through social situations; when I walk into a room of strangers with a python, I know I'm about to have an icebreaker conversation that I've had a thousand times before (and could recite both sides of in advance) on a topic I know lots about. It takes so much pressure off!

Obviously this idea is a big extra commitment for the whole family and not something I suggest lightly. But, if you can meet the following conditions;

* She thinks it would benefit her and is reasonably enthusiastic about the idea.
* You are careful about finding the appropriate species (e.g. I favour the royal python for their lack of noise/allergens, slow movement and simple care requirements. My partner doesn't work and needs to be prompted to get up, so he likes the constant company and "wake up and feed me" attention of the cat -dogs are too full on for him. He's raised her from a kitten and they have an amazing bond; she follows him like a shadow to the extent that I have used 'where is the cat?' to cheat at hide and seek.) 
* You as parents can afford to and have time to look after an animal for its lifespan (and to take the initiative to do so if she can't cope, rather than asking her to do it as that is one of her big anxiety triggers).

it may help lift her up a bit to have a non-human companion. It has always helped me enormously.


Her name rather than initial slipped into that last paragraph, telling you in case that's still something you want to keep off-forum

Emma x

Hi everyone,

l've  had so much help from Trogluddite and Emma and everyone else on this thread that I feel cheeky asking for more but we feel we're at a slightly different place due to all your advice and shared experiences. It's a place we haven't ever been before and I'd really appreciate any thoughts on what to do next!

We've read a lot about "defence mode" and "shut down" and feel that this is exactly what has happened to A. We've learned through these pages and from bitter experiences that traditional discipline, expectations and consequences don't work at all. We have backed ourselves into corners we didn't want to be in and if anything made the situation worse at times. Yes... just human parents doing what they thought was best and failing!

So where are we now? We have taken all pressure off trying to go to school or to do school  work at home. We add in a bit of education if we can when chatting or watching tv etc. A has inverted night and day as she says she hates the general house noises in the day which she can't control.. where are we? What are we doing? Will we arrive at her bedroom door to ask something any moment now? So sleeping in the day is better.... a tendency to go to bed at four to five am then sleep until mid to late afternoon. She can't see a reason not to do this as she finds the world just too stressful to be in most of the time.

She says she is genuinely relieved if she doesn't have to go out although she still tries to get to drama and guitar .... she hasn't managed either this week. Her self care isn't poor.. she told me today she hasn't brushed her teeth for days. She wants to keep in touch with friends but feels too stressed to do so and was crying today as she says there is so much she has to fix .. her words. 

We have decided to just love her, with no demands for a while. To encourage her in those things she wants to do. She asked today for help with getting back to healthy eating so I've made a menu for the week and we will prepare all her meals to begin with. I've also done a routine chart with just a few things on it eg try to wake by two pm, try to be in bed by four am, brush teeth each day.

There is a referral into CAMHS but no news of an appointment yet. The GP has put her on the pill as pms and hormones are also part of her picture. No medication for anxiety or depression as only CAMHS do that in our area. ASD assessment on hold.

and so, at last, to the question. HOW do we help our lovely, beautiful, intelligent girl to move out of the shut down, defence mode and back into a world she sees little point in? We are learners and we really need help on what steps to take, how to successfully encourage her to regain confidence as she feels she has lost her sbilities even tho we tell her it's just that she can't access them at the moment. 

We have house rule that Internet off between eleven thirty and seven am and phones out of bedrooms at same time so she doesn't disturb friends who are still getting up for school or be accessing internet sites all night. She has her iPad with music and downloads on it so she isn't bereft in the small hours. We have to go to bed of course to keep up with our commitments although if there is the opportunity to chat with her in the night we sometimes do a she we miss her a lot and there aren't that many opportunities for communication. Any choices or decisions are very very hard for her just now and socialising tires her so much. Her Nan was round for three hours and A made the effort to be with us but was really uptight afterwards and had a mini meltdown lasting an hour. 

Please help with personal experiences of what helped you come back from the dark place of shut down.

we so want to help... its very hard and it's sad too,

Thanks... this forum means a lot to us,

Karen 

Thankyou for sharing such a positive story, Mandy, it's great that your daughter has found ways to learn which have enabled her to achieve so much more than you once feared.

I think that autistic people's education can thrive once they find the right environment, and the right style of teaching/learning which suits them. Although my school attendance was good (no such thing as Asperger's in my day, so I had little choice), the subjects that I did well at were always the ones that I had my own motivation for learning. I learn very well from books and on-line research, done at my own pace and in the order that makes sense to me, but poorly from dogmatic lecturing that just tries to cram my head with facts that I don't see the connection between. The subjects that I did well at were the ones where I was curious enough to learn a lot under my own steam by burying my head in books and TV documentaries. I got on well with a few teachers who encouraged my curiosity, but usually daydreamed and zoned out to keep the school environment at arm's length in lessons where the teacher tried to cram facts into my head just because the curriculum demanded that I know them. That kind of learning just doesn't "stick" for me.

For education and learning support to work well, there needs to be more recognition of this; that some kids learn best from lectures, others from books, others from images and videos, others from hands-on demonstrations and games, some in groups, some alone, and so on. Trying to force everyone to learn from the same style of teaching will always leave people behind who may have a talent for the subject, but different ways of organising what they learn inside their heads.

Hi Karen61

With my daughter pre-puberty was definitely the first time I suspected something -age 11-12 but...... looking back she had always had the meltdowns the dislike of certain changes, didn't like foods touching on a plate liking to drink though straws liking things like cleaning devices or baking stuff for birthdays i just thought she was eccentric!.The School Refusal was in Reception and year 6 -we got over it in Reception and  in yr 6 it started after SATS so didn't seem to matter between May and September - she was looking forward to going to High school but from the first day of year 7 she never managed a whole week -2 hospital admissions in year 7 with asthma  made the school refusal worse, she always felt ill in the morning, there were battles, threats, tears and meltdowns -i won't go on -we got her Diagnosis (Aspergers Syndrome/HFA) after going through CAMHS twice and after the diagnosis were told school were taking us to court -I offered her home schooling but she said she didn't want it!!

When they said they would prosecute us I just told her it was out of my hands -she worked with the guide books on her own for English Maths and Science she was Home Edded or rather edded herself for 3 whole yerars (7,8 and 9)

During that time she de-schooled and made up her mind to go to College where she did BTEC L2 Science, GCSE in Maths and English then went to do a 2 year BTEc Level 3 science.

There was a time i thought she would never learn anything ever again but she's at University now she does have a Mentor and a study skills supporter but has managed to complete first year and is now in second year. i still worry about her though!!!

My advice would be not to force a child if they cant attend, praise when they can and not to take stuff off them and let them enjoy doing something -anything they enjoy : )

Best wishes

Mandy

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

Trogluddite: a very quick thank you for your responses. I think my son sounds quite like you, actually.

Just a note too: I changed my name to Suzanne from the random letters/numbers I had before. It seemed a bit more human. I hope it hasn't confused at all.

Suzanne said:

One things I've got from this thread in particular is a better understanding of 'masking'. I can see why girls with ASD are particularly 'adept' at this, but am quite interested that my son appears to be too ... and has the resulting shut-downs when it's all too much.

That's an interesting point. I do think that there are probably many autistic males who get missed because their behaviour doesn't fit the usual "autistic boy" stereotype. I certainly don't mean to be dismissive of the problems that females have obtaining an autism diagnosis, there certainly is a bias based purely around the fact of person's gender. However, I don't think that this kind of presentation is as exclusively female as many people make it seem, and I certainly find myself identifying very strongly with many descriptions of the difficulties and inner thoughts expressed by autistic women on these forums. There are certainly many "macho male" behaviours which perplex me, and some ways in which I might be described as effeminate by society's usual standards, but I have never had any doubts about my male gender identity or heterosexuality. The stereotypically "female" coping strategies that I use have simply always seemed the most natural way to work around my autistic traits.

Suzanne said:

It's a very typical pattern for him to follow a holiday or event with a long period in his room with a device, not washing or even coming down to eat (we're talking days here). Interestingly he seems still to want to put himself into these stressful situations

Just because a situation is stressful, it doesn't mean that we perceive no rewards for it. In some cases, the benefit is simply to minimise the negative reactions of other people, but the feeling of belonging, wanting to demonstrate our compassion, and other positive social effects can also be strong motivations to push at the limits of our tolerance. When weighing up the pro's and con's of engaging with people, we may well be far more influenced by how difficult or tiring it is for us to socialise than other people, but I don't believe that autistic people are simply wired to be innately asocial. When I get invited out, it's not unusual that I procrastinate for hours about whether the consequences will be bearable relative to the positive experiences that I might otherwise miss out on, including the longer-term effects that it might have for relationships. The appreciation of a friend who's celebration I have attended can go a long way to making the experience itself worth enduring and having to recover from.

Hi

To NAS39425 - being new to all this I don't think I can provide answers to your questions. I really hope someone else here can though - it seems incredible and scandalous that there may be nothing after the age of 16. I think though that some of the words on this thread can be comforting -- in particular Penny18: 

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)

I always thought I didn't have set expectations, especially academic ones, for my children, but of course I do, and readjusting these expectations I think can be (is so, in my case) difficult. I will be surprised if my formerly straight A* child gets anyway near that now. (on this though, I'm going to take a leaf out of yours and others on the thread's advice about planning and rewards etc... so bit by bit we don't lose tooooo much educationally ... ).

I also really like the advice about looking for the positives given to Karen61 - is your child 

is he drinking?

doing drugs?

running away/going missing?

sleeping around? 

Stealing?

Like you I feel amazed and saddened by the similarities of all these stories but actually I do feel a lot less alone too - a good thing because I really have felt so unsupported generally. I hope this is the same for you. I'm also really heartened to read the responses from Emma, Trogluddite and others who have an spectrum diagnosis -- it's helpful to hear about potential strategies from people who've experienced similar difficulties to those our children are now in the midst of -- and it certainly helps me feel that of course there can be a bright future for our children. At times I think I've felt a little despairing about that.

One things I've got from this thread in particular is a better understanding of 'masking'. I can see why girls with ASD are particularly 'adept' at this, but am quite interested that my son appears to be too ... and has the resulting shut-downs when it's all too much. It's a very typical pattern for him to follow a holiday or event with a long period in his room with a device, not washing or even coming down to eat (we're talking days here). Interestingly he seems still to want to put himself into these stressful situations (not all of them - there's no way he will do something he doesn't want to do) -- my feeling now is to let him have this 'down' time - I think it's necessary for him and it also does make for a calmer less shouty household.

So the summer holidays were peppered with such stressful things (for example, he did some volunteering at a local library, and we went away as a family for a week and he did a day-long course I'd signed him up to -- a drama course. Karen61: He loves drama too, interestingly) -- and between these 'events he really did seem to just need to be in his room on a screen. There is some friction in my household as my partner isn't totally on board with my backing off trying to get L off the screen these days, saying it's an addiction. Although I hate the power that YouTube and games hold over my son  (this is an enormous understatement!) my current feeling is that as long as he is managing to do other things too then maybe we should just let it go. It's quite obviously obsessive behaviour but this is a way he has learned to copy. And he does seem to get enormous pleasure from it. (Mind you, he would from heroin too, to continue my partner's addiction framing ... as you can probably tell, I have no idea what tack I actually should take... oh dear ...)

Except I know that the way in which L now uses a screen is exactly how he used to use books. And I use the term 'use' deliberately. We're quite a bookish household but below the age of 11 it was clear that L read in an obsessive fashion. I remember telling people how it was a cause of concern but because it was books people (especially the mothers of boys who wouldn't pick up books) would laugh. I used to explain that he used books to 'hide from life' (the expression I used to use) -- and actually now I can see why he did it. But it's much more socially acceptable for him to read obsessively than play Pokemon obsessively! Actually, even with the small element of understanding I am gaining, I'd prefer him to be reading or have another interest to be obsessive about. But I wonder if that's fair? Surely any obsession is serving the same purpose, of absorbing him so he both finds pleasure and a 'safe space'?

Re. PDA, do you think this is an important diagnosis to get if it's there? I have no idea if L has it or not. Though I do know that he wouldn't do ANYTHING we asked of him as child unless he wanted to do it, and threats, inducements/bribes, positive parenting techniques blah blah never worked at all. I quite like that there's an element of his diagnosis that absolves me from the label of being the awful failed parent that at times I appeared to be/felt. I suspect though that you can't switch PDA on and off and (at least until recently), L has always been very 'good' at school.No PDA evident there.

I have learned so much from this conversation. L is  still refusing to engage with his diagnosis at all (apart from responding, when I asked why his school grade targets have all been reduced: "dunno, maybe they don't expect much from autistic kids" ). But I will buy the 'Been there, done that, try this' book - to find out more myself and maybe L can choose to read it one day when he's ready. At the moment he veers from wanting to conform hugely but also revelling in his eccentricity. Much like any other teenage maybe?

Actually, my lovely L appears to be having a relatively good weekend. He's just got up (it has just gone midday but heh ho) and though he's currently sitting on the side of his bed with a screen (doing what, I don't know) it seems like he will make it into town to buy some much-need new trousers. Ones that reach below his ankles would be good! I am so aware that his mood and my mood can reflect and badly compound each other... I need to work on this!

Penny61: I can't add up and am a fool!! I'm 64 vintage, albeit only a tad into 64. Still, I'm an old mum (40 when I had L, nearly 42 when I had my other child) -- bearing up though

thank you, everybody.

Hi, I'm the mother of a 15 year old boy in a very similar situation to those described in this post.  I have literally just registered as we only received the final report giving us the ASD diagnosis today.  I was amazed and saddened to find so many similar stories on the first page of this online forum.

Finding so many others facing similar problems has helped us to get some perspective though  - our son didn't meet enough of the criteria to be diagnosed with ASD.  Instead he was labelled with Social Communication Disorder (seems to be like ASD light)  and Selective Mutism.  TBH sometimes, often even,  we struggle to know to what extent he has choice in his responses and is 'playing us' and to what extend it is just symptomatic of problems which he isn't getting the right support for and he just needs understanding and help.  Sometimes this can really divide us - one of us tends towards 'leniency and understanding' and the other towards believing its 'calculated manipulation' and we end up as polar opposites.  Its horrible. The true story is probably somewhere in between.  It is a relief to read the stories here and find that what we are struggling with seems to fit an ASD teenage pattern.

Our son is in year 11 though things started to go pretty wrong in the last half of year 10, triggered by a friendship upset that he never quite came back from in terms of coping again at school.  He managed to get to school most days in year 10 though skipped classes he couldn't cope with, didn't do any homework or revision,  and didn't write anything in the exams for those subjects he found too stressful.  For him, it is any subject that doesn't have concrete black and white answers.  So he is great at science and maths, but is stressed out by  English language or literature where he is asked for an 'opinion' or 'to discuss' or 'analyse the writers intentions'.  

This term he has started to be so anxious that he cant make it through the school doors, even if he can make it out of the house (which is rapidly becoming a rare event), and he has missed the last 3 weeks of school straight. I think the proximity of GCSEs is part of the problem.  Also a significant number of his small friendship group have just announced that they are all leaving to go to (different) 6th forms elsewhere and he is devastated as he says he can't cope at school without their support, and can't bear to have to make a new set of friends; and even though they haven't left yet he is beside himself with worry already.

The school have been really helpful in terms of offering a reduced timetable which excludes all the problem topics, but he hasn't been able to conquer his anxiety enough to return and try it.

We are lucky to have been referred to Camhs quite quickly as his mental health was pretty bad and he had been self harming. We have just received a rather late diagnosis of ASD.  Ironically, having been told for years that he didn't meet the criteria for ASD, we are now being met with astonishment that he wasn't diagnosed years ago. If only he had been...

We have just been turned down for an EHCP assessment by the council who state that "there is no evidence of special needs (despite having input from Camhs re extreme anxiety; and an ASD diagnosis ( though it was a private report as Camhs waiting list would have taken up past the end of year 11) ; and "no evidence that he isn't succeeding at school" (despite not being able to attend some lessons and getting ungraded exam results in half of his subjects even though his cognitive tests show he is capable of 9 8's at GCSE as for so many others on this forum).

We have tried to get a tutor at home to help with the subject that he really hates but has to have to access sixth form or college, but so far he hasn't engaged with the tutor at all because he can't talk to strangers at the best of times, let alone about a subject he finds incredibly stressful.  We paid the tutor to spend their last session playing computer games with him - that got him talking so maybe their next session will be better.

Camhs are suggesting that he take a break from school for a year or so and leave GCSEs for now until his anxiety is better under control.

Our hearts say that this is the right thing to do for his mental health, but if we don't have an EHCP we have no idea how to get him access to education when he is eventually ready to study for GCSEs and A levels.  We are also scared that if he comes out of education he will never return to it as the pattern we have seen is that if he finds a way to avoid a stressful situation he never returns to try it again.  Although we might help his mental health in the short term, if he doesn't end up with the qualifications he needs to have choices in the future he will be devastated.  He is already terribly worried for his future.

When I spoke to the council yesterday they said that they only have a responsibility to enrol him in a school until the end of year 11 / age 16 and that we would have to find him a place once he is old enough for year 12 even if he has not taken any GCSEs.

Does anyone understand the obligations of the council to help a child get through GCSEs and A levels if they are over 16 and have missed school for a couple of years for illness but don't have an EHCP?  Is this something they have to fund?  Or is it essential that we get the EHCP to avoid being in the situation where he can only access private education?  Apparently we can appeal the councils decision not to assess him for an EHCP but the school don't have time to deal with it (SENCO only there 2 days a week) and we have been advised we will need a lawyer to have  a decent chance of succeeding and have been quoted up to £10k for the legal fees which is horrendous.  And if he gets assessed by the council and they give him an EHCP apparently we may still have to go back to court if the provisions included in the EHCP by the council are insufficient (which based on current form they will be).

We are feeling clueless and unsupported - no one seems to be able to tell us what the path back into education would be if he takes a break to recover his mental health at this late stage.

Has anyone managed to negotiate delayed GCSEs and A levels without an EHCP and without having to pay for private education?  We would be so grateful to hear how you have managed / plan to manage.

Thank you all for getting to the end of this post and for sharing your stories here - it has really helped to find we are not alone in facing these problems.

Thank you thank you thank you - and I am going to read this in more detail later and reply better later too. I have some horrid virus at the moment and too much to do at the moment including a guest arriving shortly but I would like to read this and the other responses in more detail ... I just wanted to say thanks as I hadn't realised before it was there. I'm a a forum-newbie and for some reason I thought I'd get an email alert if there was a response ... don't know why ... totally presumptuous

anyway apologies for delay, again thanks, and I will study this more later and I hope reply.

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

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 ;-)

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. :) 

Hi Karen,

She was an active school refuser and het attendance dropped to 80% which is still pretty good. After I read about PDA I realised that it was our label. Since I treat her according to their guidelines life is much better. We have good and bad days. PE seems to be the biggest stress lesson at school and I am currently fighting to get her off the hook there, but school is digging in their heals. Sigh. She is often very tired and in her speak ‘peopled out’. I make sure I collect on time every day and have a variety of food on hand. I also do not talk or make eye contact nd most days she has a nap. 

14 does seem to be the crises age though as that is when things got much worse for us. Before that we knew DD was different but a diagnosis did not seem necessary. Schoolwork was a doddle as DD cruised on natural ability.  In hindsight I wish we had a diagnosis earlier as the PDA diagnosis made me realise that DD was not naughty or nasty, just a bit different. My levels of empathy and patience have increased 10-fold and DD is talking to me and sharing her troubles and concerns with me. Am still often at the receiving end but so much better. Do not want past two years over again. I had to quit my job as a teacher as I could not continue running out of lessons when DDs school phoned. Professionals also sat up and listened when I said I quit my job as it was not sustainable with all school issues.

Reading this forum is super helpful as I feel less isolated and alone. I must admit that all this is overwhelming and everything seems like a struggle. It should not be this difficult to help one’s child.

Thank you to all for sharing, it helps - A LOT.

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.

We are seeing CAMHS tomorrow and if we have time - we have a lot of questions for her! - I'll ask about PDA and whether it can develop later in childhood. Like your daughter, Karen, M was also very compliant, always wanted to please, never really needed telling off or sanctions. I'm wandering whether M's lack of being able to cope with anything being asked of her is just another aspect of the depression.

Not being able to make choices is a classic symptom of depression - our older NT daughter had bad depression and anxiety earlier this year (she's now getting better. It's been quite a year!) and has found making ANY decisions - from 'which university should I apply to?' to 'do I want a cup of tea?' - virtually impossible. Even giving her an A or B choice has caused her to freak out!

Thanks Sassysan for sharing the better news about your daughter - it is really heartening to hear that youngsters are able to pull themselves through these awful times. We're hoping that getting a diagnosis (IF we actually get one, that's our next worry, but we'll know soon) will help M and that she can then move forward. I hope things continue to get better for your daughter xx