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

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,

Parents
  • OMG! Look on the Pathalogical Demand Avoidance website.

    Sounds like you have my 15 old daughter’s twin in your house. Ditto on most aspects but she also cut herself and successfully hid it from us. Only discovered when in A & E after a suicide attempt. 

    We now have a diagnosis and things are improving slowly. Might even reach those 8 targets at end of year when she sits het GCSEs.

    Good luck with the diagnosis. 

    x

  • Thanks for taking the trouble to join the conversation Sassysan... it really is helping me to have others sharing their experiences. I'm interested in your comment about PDA. I've always been taught through my work (an outreach teacher for children with SEND) that it was very rare and, I guess because of the word "pathological" there from birth - in fact we have a relative diagnosed with it aged 6. But Amy was very compliant up until March of this year.... now she seems to need to have the control which yes, matches aspects of PDA, but can it appear later on in life? I would have expected to see more when she was you her to be honest. Although the website may well have good ideas, like yours about choice, which could help us through this really tricky time. The only thing is she is finding choice difficult... but we may be giving two manny repather than "this or this"! I'm going to take a look. 

    I was heartened to see that she is going ahead with GCSEs - did she school refuse for a while and then go back or kept getting there despite it all?

    Karen

  • 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.

Reply
  • 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.

Children
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