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 Karen61
With my daughter pre-puberty was definitely the first time I suspected something -age 11-12 but...... looking back she had always had the meltdowns the dislike of certain changes, didn't like foods touching on a plate liking to drink though straws liking things like cleaning devices or baking stuff for birthdays i just thought she was eccentric!.The School Refusal was in Reception and year 6 -we got over it in Reception and in yr 6 it started after SATS so didn't seem to matter between May and September - she was looking forward to going to High school but from the first day of year 7 she never managed a whole week -2 hospital admissions in year 7 with asthma made the school refusal worse, she always felt ill in the morning, there were battles, threats, tears and meltdowns -i won't go on -we got her Diagnosis (Aspergers Syndrome/HFA) after going through CAMHS twice and after the diagnosis were told school were taking us to court -I offered her home schooling but she said she didn't want it!!
When they said they would prosecute us I just told her it was out of my hands -she worked with the guide books on her own for English Maths and Science she was Home Edded or rather edded herself for 3 whole yerars (7,8 and 9)
During that time she de-schooled and made up her mind to go to College where she did BTEC L2 Science, GCSE in Maths and English then went to do a 2 year BTEc Level 3 science.
There was a time i thought she would never learn anything ever again but she's at University now she does have a Mentor and a study skills supporter but has managed to complete first year and is now in second year. i still worry about her though!!!
My advice would be not to force a child if they cant attend, praise when they can and not to take stuff off them and let them enjoy doing something -anything they enjoy : )
Best wishes
Mandy
Thankyou for sharing such a positive story, Mandy, it's great that your daughter has found ways to learn which have enabled her to achieve so much more than you once feared.
I think that autistic people's education can thrive once they find the right environment, and the right style of teaching/learning which suits them. Although my school attendance was good (no such thing as Asperger's in my day, so I had little choice), the subjects that I did well at were always the ones that I had my own motivation for learning. I learn very well from books and on-line research, done at my own pace and in the order that makes sense to me, but poorly from dogmatic lecturing that just tries to cram my head with facts that I don't see the connection between. The subjects that I did well at were the ones where I was curious enough to learn a lot under my own steam by burying my head in books and TV documentaries. I got on well with a few teachers who encouraged my curiosity, but usually daydreamed and zoned out to keep the school environment at arm's length in lessons where the teacher tried to cram facts into my head just because the curriculum demanded that I know them. That kind of learning just doesn't "stick" for me.
For education and learning support to work well, there needs to be more recognition of this; that some kids learn best from lectures, others from books, others from images and videos, others from hands-on demonstrations and games, some in groups, some alone, and so on. Trying to force everyone to learn from the same style of teaching will always leave people behind who may have a talent for the subject, but different ways of organising what they learn inside their heads.
Hi everyone,
l've had so much help from Trogluddite and Emma and everyone else on this thread that I feel cheeky asking for more but we feel we're at a slightly different place due to all your advice and shared experiences. It's a place we haven't ever been before and I'd really appreciate any thoughts on what to do next!
We've read a lot about "defence mode" and "shut down" and feel that this is exactly what has happened to A. We've learned through these pages and from bitter experiences that traditional discipline, expectations and consequences don't work at all. We have backed ourselves into corners we didn't want to be in and if anything made the situation worse at times. Yes... just human parents doing what they thought was best and failing!
So where are we now? We have taken all pressure off trying to go to school or to do school work at home. We add in a bit of education if we can when chatting or watching tv etc. A has inverted night and day as she says she hates the general house noises in the day which she can't control.. where are we? What are we doing? Will we arrive at her bedroom door to ask something any moment now? So sleeping in the day is better.... a tendency to go to bed at four to five am then sleep until mid to late afternoon. She can't see a reason not to do this as she finds the world just too stressful to be in most of the time.
She says she is genuinely relieved if she doesn't have to go out although she still tries to get to drama and guitar .... she hasn't managed either this week. Her self care isn't poor.. she told me today she hasn't brushed her teeth for days. She wants to keep in touch with friends but feels too stressed to do so and was crying today as she says there is so much she has to fix .. her words.
We have decided to just love her, with no demands for a while. To encourage her in those things she wants to do. She asked today for help with getting back to healthy eating so I've made a menu for the week and we will prepare all her meals to begin with. I've also done a routine chart with just a few things on it eg try to wake by two pm, try to be in bed by four am, brush teeth each day.
There is a referral into CAMHS but no news of an appointment yet. The GP has put her on the pill as pms and hormones are also part of her picture. No medication for anxiety or depression as only CAMHS do that in our area. ASD assessment on hold.
and so, at last, to the question. HOW do we help our lovely, beautiful, intelligent girl to move out of the shut down, defence mode and back into a world she sees little point in? We are learners and we really need help on what steps to take, how to successfully encourage her to regain confidence as she feels she has lost her sbilities even tho we tell her it's just that she can't access them at the moment.
We have house rule that Internet off between eleven thirty and seven am and phones out of bedrooms at same time so she doesn't disturb friends who are still getting up for school or be accessing internet sites all night. She has her iPad with music and downloads on it so she isn't bereft in the small hours. We have to go to bed of course to keep up with our commitments although if there is the opportunity to chat with her in the night we sometimes do a she we miss her a lot and there aren't that many opportunities for communication. Any choices or decisions are very very hard for her just now and socialising tires her so much. Her Nan was round for three hours and A made the effort to be with us but was really uptight afterwards and had a mini meltdown lasting an hour.
Please help with personal experiences of what helped you come back from the dark place of shut down.
we so want to help... its very hard and it's sad too,
Thanks... this forum means a lot to us,
Karen
Hello all, I came across this thread after googling for advice re my 14 yr old Daughter (A). It was almost a relief to find that what’s happening with her is not unusual for a teen girl with ASD. She was diagnosed just before the start of Covid and end of primary school. She steadfastly refuses to acknowledge the diagnosis (I had to promise not to tell her family/friends though she knows school and Drs know). This makes it hard as I can’t talk openly with friends or access much support.
I realise none of you will probably see this but I’ve found it very useful to read the posts and replies. Karen61 I am going through very similar except A is mainly still going to school (a big positive). I find it hard to accept the lengthy shutdowns, defiant behaviour and self sabotage and have been at the end of my tether sometimes. Reading this thread has helped a lot, just knowing others go through the same.
I am counting the positives - she leaves her phone downstairs at night (though often sneaks in another device) and is still going to school although refuses to do any work at home. She is high functioning and bright so managed ok through to yr 8. Towards the end of yr 9 she got a lot more negative comments re missing homework, disruption or non engagement in class. Her anxiety and exhaustion have increased a lot this year, I think masking is taking more and more out of her on top of all the other teen angst. It’s hard to strike a balance between backing off and keeping her healthy. She refuses to eat sometimes and I’m aware of how delicate the balance is to a avoid an issue with food/eating. I won’t ramble but will read some more up to date threads now I’ve found this community.
Karen61, if you read this, I hope all is well with you and your daughter.
Yes have a lovely time Suzanne!