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, my first time on this forum too - I've had to join after reading your post! We have a lot in common!
You have described almost exactly the situation we were in with our 15-year old daughter (now year 11) this time last year. M has always found school very difficult, but has always achieved academically (predicted all 8s at GCSE) and was that child at the back of the class who sat quietly, got all their work done to a high standard and never caused any trouble. But as soon she got home she was exhausted, often tearful.
Well, last October - at the beginning of Y10 and the dreaded GCSEs - she couldn't cope any more. She became more and more anxious, started having panic attacks, and became very depressed. She took two weeks off school and was referred to CAMHS - they confirmed our belief that she was on the spectrum, and we're now near the end of the ASD diagnostic process. Her final ADOS assessment is in two weeks.
M has displayed a classic case of masking as often seen in HFA girls. As Trogluddite said, the added academic pressure of GCSEs (and boy do they lay it on at our school!) along with the changes that come along with puberty - especially around social interactions - sent her over the edge. M has Sensory Processing Disorder (quite common in people with ASD) so the school environment is too loud, bright, hot and busy to start with. And then her friends have suddenly 'grown up' and started talking about things she doesn't feel comfortable with (sex, parties etc) and she has begun to feel 'different' from them and quite isolated, even when she's with her friends at school. One of the things she says a lot is "I just want to be a child again, when everything was easy".
I don't have any answers on how to deal with this - my husband and I are still feeling our way through what has probably been the most challenging year of our lives. Emma has given some excellent answers which were really useful (thank you Emma!) I would add to trust your instincts for what is right for your daughter - even if that means you're having to let go of any parenting ideals you had before.
We were lucky in that we were referred to CAMHS relatively quickly and that M's school was very understanding and have allowed us to pursue a flexible approach to her education. After her initial two weeks off, she returned to school on a drastically reduced timetable. We knew that school was the major source of her anxiety, and it was tempting to pull her out altogether - we're both self-employed, so we could manage this - but we were worried about her becoming even more isolated and withdrawn. And we wanted to normalise going to school, whilst reducing her anxiety as much as possible.
So now M goes into school for Maths and English. We teach her the sciences, History and PRS at home. The original idea last year was to gradually increase her time at school, back to a nearly full-time timetable, but we now know that's very unlikely for us.
So one possibility, if your school will play ball, is to identify the lessons that cause your daughter most distress, and take these out of the timetable, for now at least. It could be that just having an extra hour or two to wind down each day will get her through this difficult time.
One of the hardest things we had to do was let go of the idea that M would get 10 8s at GCSE. And one of the most useful things our CAMHS caseworker said to us was "What's the use of 10 GCSEs if she's so anxious that she can't get on a bus?" She only needs 5 passes to get onto the next stage (A levels or college) - and at this point we'll be very happy with that! Another useful piece of advice we were given is that M doesn't have to follow the same timetable as everyone else - so it might take longer for her to get the qualifications she needs, but she will get there eventually.
I would definitely let her keep going to the drama club. It will stop her from becoming isolated if she needs more time off school. In fact it's the creative things that have kept M's depression at bay - she has taught herself to play guitar, writes songs and stories, draws, and makes models out of Fimo that she sells at a local craft fair. These activities are therapeutic - and any little thing that brings her some joy is worth its weight in gold.
I know that seeing your daughter like this is absolutely heartbreaking. Try to take one day at a time, take the small joys in life when they come along and try, if at all possible, to take some time for yourself! I have found that practising mindfulness, and trying to keep some emotional distance between myself and my daughter's pain (while still being there for her) have helped me to keep myself afloat - and so be stronger to help her when she needs it.
Penny x
Hi Penny,
Really good to hear from you.... I had meant to leave A's name out of it but see I slipped up! I'll try to edit mine - apparently you can if you use the more button at the bottom - would you mind doing the same please - so sorry to be a nuisance but I'd rather it that way.
Wow! Yes, our stories have many similarities - we're finding it so very very hard at the moment as she isn't even wanting to find a way to any sort of education just now. We, like you, are perfectly happy that she might only get 5 gcse passes rather than a stack of 8s - I've been a teacher all my life with a good career but only got 5 passes to begin with! I also know she can take her time and can do all this later... that's OK with us too. What we are really struggling with is her very low mood/ depression. How to motivate her to even get up or draw the curtains.... maybe a re referral to CAMHS but would this not be a good move with private assessment coming up.... but that's not til November - eek! I'm going to try hard to get her up for 2pm each day and take her out somewhere - I've found an art thing for today so cross everything for me.
School very keen to support and I am hoping they might look at very reduc d timetable for now too - in fact they're not really the problem in that they've said she can just turn up at lunch to see her friends or just go to art catch up after school.... it's her that we can't motivate and it seems to have happened relatively quickly. It's really horrible. She doesn't get up at weekends either tho we have planned two things she hasnt said no to this weekend and she is prob going to do at least one of them. At least she'll get up for drama tonight. She also plays guitar but has stopped that. She loves art but hasn't done any. She makes lists of all she should do but of course they're too long - we can't get her to see that reducing stress by reducing subject s etc is the way forward as she feels she's failing .....
my husband and I have really good strong marriage with large family (second marriage and older parents so family all independents and grandchildren in mix too) but we're finding this so tough. I went to work - as Outreach teacher to help support school struggling with pupils with SEND lol - yesterday and it was lovely to be out and about. Semi retired so home quite a lot which really seems to bug her too due to noises in the house.... "wish I could live alone" etc.
I know we need to keep sane ourselves. It's hard to see her so down and not accessing support - GP so helpful too and says to tell her she can phone and make an appointment for same day when she's ready.
so sad and tired
but really being helped by this wonderful community, thank you
Karen
Hi Karen, have edited my reply, sorry about that!
It must be so exhausting for you to have gone through this for such a long time. We also had 'I'm a failure if I drop subjects' for a while, but I think she's come to terms with that now. We keep telling her she's a warrior, that she's done so well despite all her challenges. Coming to terms with possible ASD was hard for her to begin with, but then the prospect of a diagnosis seemed to help. Getting the SPD diagnosis was certainly helpful, as it explains why she finds everything so hard. One of her big fears now is that she won't get diagnosed at the ADOS, but I think that's unlikely.
As to M's depression, we think it was the prolonged anxiety that caused it, and by reducing that anxiety, the depression is easing. It's still a bit of a roller coaster ride, with more downs than ups - but the ups are getting more frequent over time. Keeping a diary of her mood helped, as we were able to see small improvements, track things that have helped, and identify situations that have caused anxiety.
We've also recently found out about Pathological Demand Avoidance, which we think we may have a problem with. So we give her as much choice as possible. To get her into school we have a rewards system - when she goes to a certain number of lessons she gets one of the models she likes to collect. It works a bit!
Some things that have helped us: planning small things to look forward to and comedy programmes on TV (if you can get her to watch). Exercise - that was a big challenge for us for months (initially when she wouldn't leave her room we put an exercise bike in there!) but now she will go out for a walk, go swimming, play badminton and go to the gym and we're noticing a big improvement. When something didn't work, we just kept trying with something else. One thing we found is that M didn't enjoy activities, like baking, that she had enjoyed before she got depressed, so trying totally new activities helps. It has been exhausting though!
It must be really hard for you if you can't talk with her easily face to face - but at least she'll communicate with you by text. I think keeping that line of communication open is really important. We're lucky that M will confide in us but I know sometimes she keeps things to herself if she thinks it will upset us. We're learning that we can't fix it (which is really hard) and sometimes she just needs a hug or to be left alone. We found the Black Dog videos really helpful (Google 'Living with a black dog') and keep telling ourselves 'it will pass." It helps a little! Seeing them not accessing any help is so hard too - M also tried counselling for a while but it became just another source of anxiety so she stopped going.
I really hope things improve for you x
Thank you for taking time out to contribute to the conversation. I wonder if GPS ever do home visits nowadays - they used to in the 60s when I was little and my mum was poorly with bronchitis! Imagine if she came and A refused to see her tho..... she's a very understanding GP so may be worth thinking about. I was cheered to hear that you did return and did some exams - well done on that! What did your "falling off the grid look like? I realise you may prefer not to say but are things better for you now?
i feel so less isolated since coming on here....
When I read your original post that describes my childhood school experience. Mine didnt go so well after the age of 14, not to mention the fact my parents didnt really get it. If you can get her to stay in school or at least cointinuing to learn, it would be best. In my case i essentially dropped out at 14 and returned briefly to do my GCSE's, got passes in English and Science, then fell off the grid for a couple of years. My parents had me see a psychologist for a year and that was helpful, but at the start of it I was a mess and resisted it as much as possible. With time it helped a fair bit and gave me a band aid for my problems, at least until I got out of school.
Is their any chance of getting the GP to her? A home visit while unorthodox should be easily arranged with most GP surgeries. If you have an understanding doctor it may be the way to get her seen and maybe something short term prescribed to deal with the anxiety. Although this may add in a fair bit of extra stress to the current situation.
Thank you Penny. A seems to be struggling a lot with the meaning of life - finding a purpose. She keeps telling me that it isn't about school - she feels she has "existential depression" and just doesn't see any point to anything at the moment - she's known for her overthinking and for philosophical thinking... but it seems to be really dragging her down and I have no idea how to get her to participate in life on a day to day basis.
We know we need help to know how best to help our smart, caring, funny, creative daughter but it's a bit of a waiting game I guess. Wish I could get her to GP. I'll have a think about that over the weekend! I'll try to get her to look at the black dog videos. I'd love to hug her but it's a special occasion when she can tolerate that amount of touch - but she did lean on me when watching s film the other night which was lovely!
Would like to keep in touch.
Take care,