Published on 12, July, 2020
Hi,
My first time on the forums and I'm so hoping someone can help. I'll try really hard to be brief!
14 yr old high academic achieving daughter with significant High functioning autism traits since childhood and waiting date (after team said referral was appropriate) for assessment with Lorna Wing Centre. Up until March this year 99% attendance, all work done, struggled and very tired every day after school but managed. Went to bed for three days and seemed really exhausted and tired and low. Hasn't come back from this really and swings between very low and hyper sensitive to noise and light - so in bed in dark room with door shut often, or unnaturally bright if on phone to a friend (very rare) or has to see a member of the family. School attendance down to 50% or lower and very little attempt to work at home. On occasions she can be "bright and breezy" for a few days if necessary eg when we had my older daughters wedding; when she hlp d me with my step grandchildren for a few days... but then seems really exhausted and depressed again. Has experienced full on anxiety attacks since March and says she feels anxious a lot of the time. Only seems to feel safe in her room or locked in bathroom (for ages and ages - even took guitar in there!) will hit walls etc when really frustrated, bruised eye socket last week - by banging head on knees she said.
She belongs to a drama club and loves it and is getting there twice a week. School really supportive and have given her escape card, happy to see her whenever she can make it, don't make too much fuss about homework etc. She is predicted 8s at GCSE and has told us she feels a failure whenever she is below target - which being in yr 10 she often is, there's a whole 2 years almost to go. She did very well at primary and the government number crunching machine..... (I'm a teacher myself but don't get me started!)
She has just refused, again, to come to GP with me. GP is lovely and gives loads of time and Amy, who is usually scared of GP and hasn't only needed to go about twice in childhood, says she isn't scared of her at all. Yet she just keeps saying she doesn't care and doesn't want help.
Some of her behaviours can feel very controlling - e.g she can be so lovely to us if she really wants scrambled egg on toast or money towards something she's seen online, but then she can just tell us to leave her room, not communicate at all, not go to school.... I remember her saying she always thought you had to follow all the rules but she now knows nothing much happens if you don't! People have ask d us how we used to sanction her... believe it or not we didn't have to. She is more likely to get up if we don't ask her to.... this sounds likel typical teenage behaviour I know in some ways but although I'm being told "it's normal"- it isn't....
She was referred for counselling and tried very hard to go. She accessed three sessions then became very anxious and said it was like playing a role.. she didn't know what she was supposed to say to this person she didn't know in a place she didn't know so she "role played a teenager with a problem".
So the questions:
1. Can it be that a teenage girl with hfa just "suddenly" melts down to such an extent that school refusal plus staying in bed all weekend etc to.. not wanting to face life occurs?
2. If so are we right to keep trying every day to get her to school? The battles are exhausting. We've even suggested home education but she is adamant she wants to stay at her current school - but she doesn't go! Any tips really welcome as it's just awful here at the moment. Do we just ignore her or give two prompts or keep on and on.....
3. Could school be just too overwhelming for her? But without her really understanding this for herself... just knows she has a bad feeling and wants to avoid it? She is so scared of more anxiety attacks and seems to be retreating from life into room.... very poor sleep pattern too.
4. It is tempting to introduce consequences. Internet is off overnight. Devices now allowed during school time unless wanting to work (hardly ever) . Our instinct says to let her go to drama but we're older parents and another rule we lived by was "if you don't go to school you don't go out in the evening".
5. Why won't she confide in us, talk to us? She will sometimes have a long chat with me on text. My husband feels we should be able to talk face to face so to speak.... is it ok to text or am I enabling her to retreat even further?
We have a school meeting coming up. Education welfare not involved. Assessment in early November I think but we'll have the same person the next day - although she'll maybe be relieved if she does get a diagnosis and that might help. CAMHS said she didn't meet threshold... GP thinks we could try again but is it best to get the assessment done first?
I'm so sad and so tired. I want to help her to feel life is worth living but she's finding it hard to let us help and feels very shut away. She has so many strengths and qualities but is struggling so much right now.
Any help or experiences which show we're not alone or barking up completely the wrong tree really appreciated. How to engage her in wanting life to feel better?
Thanks,
Hi, I'm the mother of a 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.
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
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.