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?
Hi Karen, Well, as an autistic adult, that rings an awful lot of bells. Very like the way I presented as a teenager indeed. So from that perspective, this is the advice I would give to you re. your 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?
Not only possible, but quite common. Girls on the spectrum are usually very good at masking and get along very well in primary school when the social landscape is simple and the academic workload is light (especially for those of us who are very academically gifted).Your daughter's love of drama (i.e. she obviously has some acting talent there) and the "coping...recharge"-cycle you describe in the second half of that first paragraph, the "playing a role with the counsellor". I am almost certain she is a very skilled autistic social-chameleon. She's got this far by mimicry, and she might not even be completely aware that's how she's been doing it.
It is then the case that at some point the social surroundings get too complicated to "fake it" (puberty is very often a factor in this) and the academics become harder at the same time, causing that sudden "Oh actually I can't cope any more" situation and the associated meltdown.Unfortunately being academically gifted can itself make this worse, as it is common to hit a wall when suddenly the need to do more than coast along becomes apparent; it can cause a real panic and often the study skills just haven't been learned. 14 is the age I went to pieces too. I had horrific anxiety around school. I ended up self-harming, had to take over a month off (my doctor signed me off for depression) and was referred to CAMHS, where they noticed my autistic traits and assessed me. Like your daughter, the first time they thought I had traits but was on the borderline. When I was 17 and had my second breakdown situation that led to a re-referral, I saw a younger, more up-to-date assessor who said it was my sex getting in the way of me fitting the criteria the first time, and I was a textbook girl aspie after all.Unfortunately even the professionals are still not necessarily well-informed enough about the way autism presents in women. It's been a "boy's condition" for a very long time, because of the way it presents differently and often far more subtly in females, those stereotypes are still very much ingrained in some people's minds when they think about autism.
Have you talked with the school about this? Are there particular lessons she just can't cope with that you could find a work-around for? I had a long period of not going to maths lessons; I would spend the time working in an office and my mum would do the teaching at home. I also refused to change schools, because as much as there were people there who made my life hell there were also friends who were the only people outside my family I really trusted and I really relied on them to help me navigate socially. The thought of being without that support was just unbearable.I also often had extra "recharge day" absences, even before I was diagnosed. Mum just noticed that making me go to school anyway when I was looking like I was trying to skive made me really ill and exhausted, so in the end I would be allowed stay at home but have to do something vaguely educational (watching a documentary, reading or doing some schoolwork) if I wasn't literally in bed resting.
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.It wouldn't surprise me if that was the case. It's often very hard for us to identify and articulate our own emotions, especially as children (look up 'alexithymia'). It is also the case that anxiety attacks and meltdowns can draw a lot of unwanted, even hostile, attention from other children at school. It's possible that she is scared of isolating herself or making herself a target if she happens to have one in a public place. CAMHS could help with this approaching it as an anxiety issue, even if they aren't ready to reassess for autism yet or you want to wait for the private diagnosis.
Poor or unusually patterned sleep is very common with autism. My also-aspie other half has never shaken this off; he'll often get out of bed when I come home from work and go to sleep again at around the same time I'm waking up. I have more-or-less conquered my body-clock, though I do sometimes end up drifting towards a night-owl sleep pattern when I'm not working (I'm in education, so long holidays).
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". I would not stop her going to drama, I expect that doing so would only isolate her further from her peers and definitely not be good for her mental health. If it's anxiety or exhaustion, and it sounds very much from your description like it is, punishing her for not going to school literally can't help her. She can't just magic up the fortitude to struggle through the mire of stress that is school. To a non-autistic child with a physical illness "If you're well enough to go out and play you're well enough to go to school" is reasonable.If she is experiencing that much anxiety and energy-drainage from school, if it's a mental issue, it's more like saying "if you can walk across the living room you can run a marathon, so get to it". The two are just not comparable in terms of emotional workload.
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?Again, this could be rooted in a difficulty to identify and articulate feelings. I find it MUCH easier to write my feelings than talk about them; it gives me extra time to think about my responses and make sure I'm not making mistakes. A preference for conversation by text or phone could also be down to protecting herself from the confusing input that is the other party's body language and expressions, so making it easier for her to function in a conversation scenario. There's so much extra baggage that comes with a face-to-face interaction that non-autistic people don't even seem to realise is there, because it comes so naturally to them. To us though, it's like trying to have the conversation while the TV is on full volume right next to your ears, there's a small tornado in the room and someone is poking you with a sharp stick. Too many distractions, too much going on, the content of the conversation isn't getting a look in!If text is easiest for her, text is absolutely ok. The important thing is that she is communicating with you which is good and very important. You're more likely to get a complete communication shut down, which is not good for anyone, than anything else by insisting on face-to-face.
On "what can help";
I found CAMHS counselling very helpful at that age. I also have good things to say about CBT (cognitive behavioural therapy). The thing that really brought 14-year-old me back from that low, though, was going to a gifted and talented summer school focused on my special interest (biology). Being around other children I considered "like me" for a week (rather than the anti-intellectual and bullying peer group I was subjected to at school), having that bit of supported independence, being able to be socially successful on the trip, it completely restored my confidence. To give an example, I went from "near-complete isolation and an almost phobic reaction to the prospect of interaction with strangers" to "spontaneously asking a shop assistant where I could find something when Mum and I were out and leading a song-and-dance routine with my friends in front of a class at school". My mum said it was like I came back a different child.I don't know if there's anything similar going on next school-holiday that your daughter might want to be involved in. I suspect there is if the area of interest is drama. Worth a bit of research. Feel free to ask anything else you need to You're definitely not alone.Emma x
Hi, This happened to my 14 year old daughter and the situation could not be saved as there was something seriously wrong. She dropped out of school and was inadequately home schooled for 16 months, during which time she had a mental breakdown. At last she was sent away from home into a specialist AS school but it provided its own traumas and the curriculum did not match that of mainstream so she missed out on her education. You just have to go with her and not with other players, and weather the storm together and try to keep your relationship intact. I have no answer to the situation. I don't think there is one.
Emma - thank you so so much for your very detailed, helpful and reassuring response. I sent it to my husband to read and he sends his thanks too. It's very hard when she finds it tricky to understand what's going on and other people like to tell us she is just being an extremely difficult teenager. We know it's more but then the way she reacts makes you question yourself sometimes and you have explained really well how some things are manageable and others are insurmountable.
Where we live the GP doesn't diagnose depression or do medical notes for children tho she is really great and supportive. CAMHS say she doesn't meet threshold tho GP and school willingnto try again. It's up to us to decide if she is fit for school or not. I wonder how she'd react if we said she wasn't to go for two weeks... or until after the assessment even... would we see more if her strengths and character and hear more knowledge about movies and her other interests? Would she become less anxious/ more relaxed or become anxious about not seeing friends? Her main friend is actually at a different school as it happens.
Im sure I'll be back to ask some more if you really don't mind.... the way you described what may be happening for her makes such sense. Like the idea of a special week.... will look out for something.
it's certainly not easy to find an answer but just at the moment it's just helpful to know that this doesn't happen to 14 year old girls who are hfa. We still await diagnosis but the Lorna Wing said referral was appropriate so we're hopeful - and so is she. I wouldn't mind home schooling her - she is always most alive in the evening and has just sat and done geography quizzes for fun after tea with her dad - so it would suit her sleep pattern better, but I also like the mix n match idea which Emma made me think about - but you need school on board for that. I'm sorry you had such a tricky time but I hope you and your daughter are getting on ok now. Thanks for responding, good to know we're not alone, Karen
Glad it was helpful for you both Karen! It's hard to say which way she would react to an extended break, I know I found it helpful but I was also initially anxious about being separated from my friends for that time. All you can do is suggest it to her and trust her instincts. Having read your response below as well, I wonder if a reduced timetable arrangement would help ease a little of the pressure without completely giving up school for an extended period. Schools are often willing to try this in cases where there is a need; a good handful of the children where I work are on a similar half-day schedule for a variety of reasons.She could then start at school later in the day (e.g. she could arrive just after breaktime) and you could go over things she might be missing earlier when she gets home in the evening. Less exposure to school stress and better suited to her natural sleep schedule.You're always welcome to ask more my PMs are open if it's easier for you to communicate that way than posting on the public forum. Hope you find something that works well for you all.
I meant to say DOES happen of course.... not sure how to edit posts yet!
An excellent answer there from Emma, so I won't repeat what has been said so well already.
Emma said:(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.
Karen61 said: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.
It's in the little menu that drops down if you click "More" underneath the post. Just shout out if there's anything else you need help with; the forum interface has a lot of little secrets hidden away like that!
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!
Hi our situation is almost identical. M who is 13 nearly 14 has always had behaviours that have concerned us such as anxiety, lack of close friends, afraid of change etc. Her anxiety levels shot up though about 8 months ago which and she started to refuse to go to school. This started as just Monday but then eventually escalated to total school refusal. She hasn't now been to school for the last 7 weeks excluding the summer holidays. She can't tell us why school provokes such high anxiety and all the obvious possible causes have been excluded. During this period of time it gradually dawned on us the this might be ASD. She was referred to CAMHS but refused to attend the appointment! The conclusion is that this is likely ASD and we are waiting for a home visit for an initial assessment. The full assessment waiting list though is apparently months.M also has a passion which is riding and we also have struggled with her eagerness to continue this whilst school refusing. Our conclusion was that this is where she feels included, it contributes to her self esteem and allows her mix with girls her own age. We are at a loss what to do next. We're waiting for the CAMHS appointment in October and are coming to the realisation that it may be a long time if ever that we get her back into mainstream education. Home schooling unfortunately isn't an option because we both work full time and can't afford to reduce hours or give up work. I'm taking a few weeks off to support M but cannot see where we go from here. I need to be at work but how can I just go back to work and leave her. Puberty seems to have been the trigger to the exacerbation of her symptoms and probably because she couldn't maintain the masking. We have considered a private assessment but have been told that the local LEA won't recognise this with regards to EHCP etc.