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
  • Welcome.

    An excellent answer there from Emma, so I won't repeat what has been said so well already.

    (puberty is very often a factor in this)

    I was in my early teens that I started going off the rails, and I think that puberty was a very big factor in this. When we're younger than this, our peers are all children who haven't yet developed any of the subtle and complex social behaviours of adults. An autistic child may pick up and learn these social behaviours relatively easily. At puberty, social development goes into overdrive, as adult social interactions and sexual feelings develop. This is happening to all of your daughter's peers; she is surrounded at school by teenagers who are experimenting with new social behaviours and who's personalities and social groupings may be changing faster than your daughter is able to adapt to. It is extremely common to hear from parents of autistic children of a dramatic change in the expression of autistic traits at this age.

    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". 

    This is a very telling remark. It demonstrates perfectly what Emma was saying about masking her autistic behaviours. She is not thinking in terms of her own feelings and desires, but is consumed with analysing what other people expect of her. This may help her to get along with other people with fewer conflicts, but it comes at the expense of developing a sense of direction in her life, her self-image and her self-esteem.

    Even in adulthood (and as a male), I find questions about my life goals and feelings incredibly difficult to address; I'm so used to never thinking about them because I spent most of my life always desperate to "play the right role". This might play a part in her reticence to talk about her life with you. It probably contributes to her apathy and disruptiveness too; they could be a way to feel that she has at least some control over her life; because everything else just feels like following someone else's script.

Reply
  • Welcome.

    An excellent answer there from Emma, so I won't repeat what has been said so well already.

    (puberty is very often a factor in this)

    I was in my early teens that I started going off the rails, and I think that puberty was a very big factor in this. When we're younger than this, our peers are all children who haven't yet developed any of the subtle and complex social behaviours of adults. An autistic child may pick up and learn these social behaviours relatively easily. At puberty, social development goes into overdrive, as adult social interactions and sexual feelings develop. This is happening to all of your daughter's peers; she is surrounded at school by teenagers who are experimenting with new social behaviours and who's personalities and social groupings may be changing faster than your daughter is able to adapt to. It is extremely common to hear from parents of autistic children of a dramatic change in the expression of autistic traits at this age.

    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". 

    This is a very telling remark. It demonstrates perfectly what Emma was saying about masking her autistic behaviours. She is not thinking in terms of her own feelings and desires, but is consumed with analysing what other people expect of her. This may help her to get along with other people with fewer conflicts, but it comes at the expense of developing a sense of direction in her life, her self-image and her self-esteem.

    Even in adulthood (and as a male), I find questions about my life goals and feelings incredibly difficult to address; I'm so used to never thinking about them because I spent most of my life always desperate to "play the right role". This might play a part in her reticence to talk about her life with you. It probably contributes to her apathy and disruptiveness too; they could be a way to feel that she has at least some control over her life; because everything else just feels like following someone else's script.

Children
  • Thank you Trogluddite - honestly this forum is so so helpful and reassuring and I'm wondering why I didn't access it ages ago! She is really struggling with thinking about a future at all and your suggestions about why that might be ring true. I had begun to be a bit interested in the fact that she is needing/liking (I prefer needing!) to be in control at the moment and you have pointed me towards an explanation. In my work I have come across children diagnosed with PDA and whilst I honestly know that she doesn't have that form of autism I've been interested in how much more she tries to control the home environment at the moment whilst everything else seems so tricky for her. She still manages routines that have been "set in stone" since she was little eg we eat evening meal together at the table - but now I swear on the bad days she must just switch into role as she can have been curled up under bedding, door closed, curtains drawn, no lights on all day then we give the 10 minute and 5 minute warning and she arrives, yes undressed and unwashed on bad days... but she sits and eats and tried hard to make conversation.... then disappears at the first opportunity back upstairs. 

    Your comments about the social life at school also resonate.... she has not been as keen to see her friends and told me that two of them are arguing at the moment and have tried to involve her and "it's all too much". Her friends aren't the "solid" friends she had in childhood... maybe one of them is closer to this, but she found it very hard to fit in and has eventually become part of an "emo" group... she went out with them once or twice but doesn't now. I remember her telling me that although she joins in and swears with them in school and can be loud with them at school she never imagined for a moment they would be the same in the cinema/ at a restaurant and she felt really uncomfortable. Eg we always taught her to put popcorn bucket in bin on way out and they just left it all over floor... she didn't and got very teased for this. A silly example but it led to a parent compliment "you always told me manners were important and I never realised why but I didn't like how they behaved in the restaurant and the waiter came over..."  I think they are a group to be with so she's not alone but they can be very tiring at times. She makes very little effort to go out with them outside school and refused a couple of invites over the summer. She has develop d her own style mind and wears very distinctive make up which I maybe wouldn't have expected as I keep reading that girls with hfa seem younger than their peers - that doesn't ring true exactly tho she keeps wishing she could be back as a child as it was so much easier then. Maybe the dress style (emo - black and white - she looks good in it) and make up etc is hard work too.... I know she has deliberately made herself wear uncomfy clothes, up until aged 14 it was the same pair of leggings from Hand M - we've had them from age 3 to age 14!! 

    Oops... must get ready for work. Thank you again. One thing more - She says she is worried about the assessment as she knows lots about hfa and is maybe exaggerating in order to be diagnosed, she is worried about being honest on the day. I've said Lorna Wing best in country in my opinion and will be able to seek what's really happening and not to worry. Part of her is really worried she won't be diagnosed as then "I won't know why I'm w"weird"! 

    Thanks everyone.... this is helping me a lot. You're all stars!

    Karen