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,
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.
As a fairly new step parent to an autistic child, I can understand how challenging it must be when they unintentionally damage your house. It's important to remember that children with autism may have difficulty understanding the consequences of their actions.
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Yes have a lovely time Suzanne!
Wow, that's early! Hopefully you won't hit much traffic at that hour
Have a good holiday! x
Thank you @trogluddite and Emma - again really helpful and insightful replies.
We're off on holiday tomorrow in the very early hours - we have to leave at 3.30am. I know who will be the only one of us properly awake at that time! I just wanted to say thank you before leaving. And wish you all a lovely week.
Karen61 said:Thank you so much Trogluddite
You're very welcome.
I'm of a generation who never had the chance to be diagnosed as children unless we had severe learning disabilities, and neither I nor my parents had any help to deal with the problems stemming from my autism other than each other. Unless by some lucky stroke of fate, each autistic person, each family, struggled in isolation, not even knowing that there were others just like them, because we had no way to find each other or even know that we were alike. Communities like this one are an incredible thing to have, and can make such a positive difference. They certainly have for me since my diagnosis a few years ago, and I don't begrudge for one moment giving something back.
I'm very unlikely to ever be a parent, and in all honesty, my autistic traits almost certainly mean that I wouldn't be cut out for it. I quite enjoy being a crazy uncle, though! To hear of other people's autistic children not having to work everything out the hard way, like my generation did, brings me a little consolation for not being able to turn the clock back on my own life.
Compared to the hardships and hard work that you are all putting into raising your children and getting the very best support for them, me typing a few words of encouragement and recounting my experiences does not seem an arduous task.To take us full circle back to my previous post; belonging to a bunch of people who come together to make the world a better place for each other, and for the people we care about, helps to keep my own apathy and nihilism at bay.
Best wishes.
Glad she made it to Nan's! :) She's obviously trying hard. Fingers crossed she keeps doing so; small victories are things to celebrate!I don't think I can add too much to Trogluddite's post, it's all completely sound. Your husband is right about taking it steady, too. (I laughed at the pair of them secretly eyeing up snakes, Karen! And in response to your question the other half and I generally overlap in the evening, occasionally in the AM if I get up early too.)14-16 is indeed an extremely tricky time for most of us, the combination of "puberty", "first lot of genuinely hard academics" and "incredibly difficult and constantly-changing social landscape". There's nothing like it. I do think she will come around but it will almost certainly take time. I was very similar (the "I didn't ask to be born..." is 14 year old me, verbatim), 17 is actually when I started coming out the other side of it. That teacher definitely has a point. Wishing you all good things and many more small victories. x
Thank you so much Trogluddite... especially your good advice about listening and letting the conversations happen. I think I thought to shut it down as we couldn't help her find a way through her very real philosophical beliefs that life is ultimately meaningless and that our inability to see it from her point of view just frustrated her too much. But I agree... she has always always been a thinker and a philosopher and that will stand her in good stead in lots of ways, tho the overthinking is making life so tricky right now for her and for us.
We are trying hard to throw out old parenting ways out of the window, tear up the rule book etc as suggested here, and we are doing pretty well. Maybe next we need to throw out the idea that it is unhealthy or wrong or whatever to spend a period of time sleeping in the day and being up at night.... until things get a bit straighter in her mind.
A teacher in a specialist school for girls on the spectrum has said that this is very very common .... for fourteen to sixteen year olds to have a really extra tricky time. Can we manage another year?! Time to sit back and try to relax maybe,
thank you. You always take such time to give helpful responses to all of us struggling with knowing how to help our much loved children.
I was wrong! She got herself together and went... well done A!
Hi everyone, I hope you are all well.
Regarding the sleep patterns. I have always been exactly the same, as my Mum before me; my body clock seems to think that I live somewhere in the USA Mid-West! No amount of prior sleep-deprivation seems to make much of a difference, and nor has any of the usual advice or medication. Forcing myself to go through the day at school or at work when I'm shattered is just something I've always accepted that I have to do, and I just grit my teeth and get through it. I can't really tell you how, because I've never known any different, and I used to think that many of my autistic traits were just the result of chronic sleep-deprivation.
Whether it is due to liking the less stimulating and more predictable hours of the night-time, or an innate sleep disorder, is something that I've asked myself a lot. I have never reached a definite answer, but I suspect it's probably a little bit of both. I took part in some research into sleep and autism a little while ago; the full results aren't out yet, but the preliminary findings suggest that up to 60% of autistic people have a sleep disorder of some kind, with late-onset insomnia being the most common. Other, similar research suggests much the same.
There is some evidence that for some of us there is organic cause due to a problem with the way our brains produce or process melatonin; a brain signalling chemical which resets our body clock each day to keep it sychronised. Appropriate light levels at certain times of day are an essential part of this system, so therapy with a light-box may help, as can outdoor exercise, and computer apps which subtly adjust the colour of the screen to match the sky at different times of day (I have found the free app f.lux effective and simple to use, which you can download here; there are versions for Windows, Mac, and most mobile devices.) Some children have been effectively treated with melatonin supplements, though NICE does not recommend it for this purpose because there haven't been big clinical trials yet; so you would need a sympathetic GP, and of course, should be as watchful for side-effects etc. as with any medication.
Regarding nihilistic and apathetic feelings, I sympathise very much. In part, I think this is because autistic people often compensate for lacking social intuition by analysing everything all the time, and it can turn us into amateur philosophers; constantly questioning the meaning of life. But ultimately, constant thinking about these things intellectually will never give us the answers we need; otherwise philosophers would have stopped arguing about them centuries ago! This ambiguity is often very uncomfortable to an autistic person, as ultimately, formal logic can only tell us that there's no way to prove that life ultimately has a purpose (it can't prove that there isn't one, either, of course!)
The only answer is to do more and think less, so having creative hobbies and people there to share things with are very important; these things can become the purpose that we're seeking, even if only temporarily. I would definitely discourage you from shutting down such conversations if at all possible, as this might just lead to worse feelings of isolation; the typical teenage feeling of "no-one understands me" is magnified enormously by being autistic. Just to be listened to and not dismissed as being silly or irrational is a huge help, even if you have nothing to say to counter the negative points of view themselves. Keep the communication channels open at all costs, even if what you are hearing makes you uncomfortable.
Oh yes Suzanne.. this is definitely a support group! Think I was just getting a bit guilty about saying much the same again and also though it would be good to get together for joint ranting/despairing/hoping/ problem solving! I live in the south too. I'll try and work out the pm bit. Can't stop for long now but much as I don't want anyone anywhere to have to be facing what we're facing it's also somehow reassuring that we're not alone.
Have to go out to choir now... sing my heart out before coming back to face it again. Today she's not up yet and is supposed to Be trying to go to my mum's for tea... she loves her Nan but I don't think she's going to make it. I may be wrong.
I've never sworn as much internally as I have lately!!
Im meeting up with someone on Monday who is mum to one of A's friends to talk about home schooling... tho as Amy can't face anything like work or a demand at the moment I can't imagine we'll b hurrying down that route any time soon.
Take care and thanks for listening earlier
Hi Karen61 - I don't know what to say but I wanted to let you know that someone 'out there' did hear you.
I honestly don't know what can be doneabout the inverted day thing, the school thing, the 'so bored, what's it all about' thing - all of which L is going through too -- though he's only at the beginning of school refusal (I fully expect it to get worse ... though maybe I should be a bit more positive). And actually I'm not convinced it's school refusal with L. He actually likes school because he sees his friends. He has a group of like-minded boys he gets on well with, largely thanks to a common interest (obsession?) with (expletive deleted) gaming/YouTube/other net-based stuff. We don't turn off the wi-fi in the house - partly because both myself and my partner need it (and he works late) but also because it's so difficult to constantly find hiding places for the router/devices and also L has been threatening in the past and although it's been very sham-style posturing before when he's threatened, I don't want to test him, especially with my other child around.
Anyway (lost my thread... )I think L doesn't make school because he's just so tired he can't get in. He always goes to bed in the early hours (1-3am) - and the other day it was 6.30am apparently. That was a day he went into school on - he must have been shattered! Interestingly, I said I thought we ought to go to the doctor's about the sleep thing but that I couldn't make an appointment if he wasn't willing to see her too and he said he was. I made the appointment today and told him and he seemed pleased, which I took as really positive. The doc will only give the same advice I give (Dr and I talked about this today!) but it might be better coming from her?
So why do people with ASD have sleep issues, or prefer to be nocturnal? Is it for the quiet? I think @Emma mentioned her partner preferring the quiet of the house at night. Most of the noise in our house seems to come from the (expletive deleted again!) screen from L himself!! L has actually never moaned about the noise in the house - only his brother's drumming but that's understandable! Is there anything I can read shedding light on this? Are there any useful suggestions for getting over it other than the getting exercise, experiencing daylight, not being on screen late at night - none of which L will listen to (from me... let's hope doc's words work).
I think it's lovely the pleasure your daughter gets from her guitar and drama. (In that, she is again like L ... I LOVE watching him tinkering on the piano (lessons long given up because he said he knew how to play -- haha!! so arrogant. He really does not know how to play but he knows where the notes are and is pretty good at musical theory) but L won't actually do ANY practising on the instrument he's now taken up and says he enjoys. So I'm currently threatening to stop lessons -- which of course I don't want to do but it's crazy paying for lessons when there's no practising going on ... and anyway then he'll get out his sax and play (with his dad like your daughter!!) and it is really nice and I think of course I can't stop the lessons. It all drives me bonkers (and probably L with all those mixed messages I'm giving ... but in fairness I feel I'm only just learning how to 'parent' a child with autism - as in, being very clear in my language and words being taken at face value etc (this actually pains me... thinking of all the confusion and difficulty I've probably caused L in the past).
Now it's my turn to admit to rambling. Support group?I think this is a support group, of a kind, no? I certainly have found it supportive in the week or so since I've found it. I don't know how you direct message but feel free to direct message me if you think a meet up is possible/desirable. I live in the south of england and don't really, for obvious reasons, want to say any more than that in a public forum.
Keep on counting the positives .
This may save any of you needing to reply. My husband is more measured than me.. not as emotional. He said this morning that it seemed over the past few days that there has been some progress with A communicating with us a bit more. He says I'm always looking for a quick fix (I'd like to think he's wrong but maybe not) and that he thinks we should just keep going with our plan of staying calm and patient and showing love and care regardless. Encouraging if we get the chance.... I wonder if we should shut down all possibly tricky conversations the moment they begin, even if A begins them..... or whether its better to explore for a little while with her but be really alert to it becoming unhelpful for any of us..??
And so I'll have a quiet cry and carry on loving and hoping she comes through. Think she'd love to live alone but not possible at 14!! Tho she might find she does need to operate in the day at times - like your fiancé Emma! When do you get time together?! Maybe I even have to think that having an inverted day is OK too.... I find this really hard and worry about it. Guess she'd make a good night worker tho!!
ive also re-read the whole thread (that took a while) and have been reminded of how many other people are facing similar situations. Support group anyone?! Would be good to chat face to face over coffee but realise that's a very long shot!
I am going to begin a "positives" log so that I can look back and see tiny steps of progress and focus on what is going a bit right rather than despairing about what is going wrong. I re read something by Penny61 I think it was about throwing usual parenting expectations and style out of the window. This is harder to do than I expected, but I will go on trying!
Wish we could have gone for assessment as planned. A says she could have managed for the day probably but clinicians advised against it until seen by CAMHS.... still waiting to hear back from them......
bye for now.. hope you all have reasonably positive days.
Yes to pets Emma. We have two cats, one of which A has had since a kitten. You're right , she's not feeding her at the moment but we are. I mentioned a snake last night (we won't be getting one) but was really surprised to learn that my husband and A had each secretly wanted a snake!! The things you learn... also my mum is hoping to get a dog soon - she lives in the same village - and is hoping to include Amy in it all.
We came home last night from a rehearsal to find A singing and playing guitar and her dad joined in. It was lovely. Then she wanted a fire lit so we did that and she and her dad watched some tv whilst I was in same room reading... also lovely. Then we got into a conversation unexpectedly about the internet going off and she, being very articulate and bright, tried hard to prove that we have our thinking back to front .... then the conversation moved on to her not wanting to get better, wishing she didn't have to live with us, not wanting to live as life is pointless etc. It became quite upsetting ( but we stayed calm and with her) and, to be honest, she was calculating and seemed to change persona (if that's makes any sense) to someone who wanted to give the impression she doesn't give a **** about any of our attempts to help, about joining in the world at all etc. She was doing everything she could to push us as far away as possible. I think I get it but it's very very hard to cope with and this morning I'm just in pieces wondering what to do for the best.
She knows about what could help her to get better (diet, exercise, some outside activity etc) but says she doesn't want to get better. She says she knows our lack of pressure about education is "fake" (it isn't actually - she has time later in life). I was pleased she had eaten what I'd prepared and said so "why wouldn't I if you're going to get it all for me" ?
positive from yesterday include eating with us in the evening again, playing and singing on her own and then with her dad, watching to and toasting marshmallows on the fire, brushing teeth at some point, managing a conversation with both of us in the room. She didn't wash or get dressed tho at some point in the night/arly morning she has been out for a walk so I guess she got dressed then! Been awake all night and pretended she was asleep at 8am until I picked up one thing from the floor as her room is now unhealthily untidy - fruit flies, a bit smelly etc. Told me to get out as she had only just fallen asleep (she'd been talking to someone - probably her boyfriend- just 10 mins before that).
Gosh - I see that I'm just venting really.... but I'm going to let it stand as we just don't know what to do. We think we understand and then she is so mean and unkind to us.... is it because she let us get too close for an hour or two?
I'm going to be talking with a friend's mum whom A asked to get in touch with me about home schooling - she doesn't seem interested at all but she did this for me so perhaps she is. Some relatives have the opinion we should just take her out of school - just do it - but A isn't entirely convinced and it's a big decision. And also she says all the time that it isn't just about school..... and her actions would suggest this too.
We are so stuck. We love her so much. We have no idea how to help her to want to be a bit better. She is staying with her sister next week who she feels safe with and who is planning some lovely evening things..... maybe that will jog a thought about wanting to take part in life again. She is so articulate that she can argue all our arguments (e.g. "You say you're fine but although it is usual to have a messy room it's not usual not to wash or brush your teeth" etc... she retorts that why does it matter if she doesn't even care about living. Or "it's usual to not like your parents and not want to be with them when you're a teenager but it's not usual to invert night and day to avoid them" she will say that why does it matter, of course she knows that life happens in the daytime mostly but she doesn't want any part of life.... her dad said that as we live in the same house some compromise from each person is needed... that didn't impress her. "I didn't ask to be born or to have to live with you...."
We are living right on the edge. We don't want to fall.
Is there anything else we should try or is it just a long waiting game? I'm going to read all of these replies and ideas again later today. Even if you're all a bit fed up with my writings thank you.... it doesn't even matter if no one replies today... it's really helpful to know someone listens! But I'll try to stop posting as much - give you all a break!!
Royal pythons are great aspie pets, they're relaxing, hypoallergenic, silent, eat very cheap food once a week and defecate a couple of times a month at most. They're slow moving and good to handle if you are worried about keeping hold of something wrigglier; the lap pets of the reptile world.They don't care how much human attention they get beyond keeping them fed and watered; if you're particularly busy one week and don't get them out, they aren't bothered.They're heavy enough to provide deep pressure (which many autistic people find incredibly calming) by simply sitting across your shoulders (mine will happily do this for hours, he has fallen asleep around my neck before) and have a really nice texture. The downsides are that you have to be able to handle dead rats, the setup can be expensive, you can't handle the snake when they have just eaten or are about to shed their skin, and they can be finicky with food and make you worry about them. Also when they do need to see a vet (very occasionally if your care is spot on, but these things can happen to anyone) it's more expensive than a regular vet and you need to have a specialist.
Trogluddite said:In some cases, the benefit is simply to minimise the negative reactions of other people, but the feeling of belonging, wanting to demonstrate our compassion, and other positive social effects can also be strong motivations to push at the limits of our tolerance.
Thanks so much for this reply, we are finding this very much with M just now. She is so desperate to maintain friendships, but finds all interactions difficult and very tiring. She is also still learning what she is capable of coping with - she has big plans for long social evenings, parties or visits, but then can't get through them. We are trying to gently steer her in the direction of short but regular socialising, without shooting her plans down - and building in time for her recover afterwards as she invariably has a shutdown or gets very upset. You've given me hope that she will learn to manage this, thank you!
Had never thought about snakes before - M enjoyed handling them at the farm park. She's been asking for a horse lately - but I suspect a snake would be easier and less expensive
Yes, definitely would prefer to have pets and lose them than not at all. I didn't have a pet growing up and would have loved one dearly - so have always had animals since owning my own home.
True, it is always very hard when a pet dies because that bond can be so strong. The cats my parents had before I was born were like siblings to me. Those deaths hit very hard. That said, I wouldn't have preferred not to have them in the first place. As for your family, benefits > disadvantages.This is another advantage of the snakes; my python has a captive lifespan of 30-45 years. Accidents in a vivarium are unlikely. We're growing old together.
Animals, yes! We have three cats and a dog, and sometimes M will just sit and cuddle one. It calms her right down. She really loves animals and seems to have a 'way' with them. In the summer she had to do 2 weeks work experience, we arranged it with the local farm park but didn't think she would be able to go. In fact she managed an hour a day and loved doing the small animal handling with the little kids - she was able to engage with others by talking about the rabbits and guinea pigs. She now wants to volunteer at the farm park at weekends - a major breakthrough for us!
One problem with animals is that they can pass away. M had her own cat and it was killed by a car last year (just after she had her crash and stopped going to school, the most appalling timing). She had a really special bond with that cat, and still gets upset thinking about it. We went and got two more kittens a few weeks afterwards. Overall we feel the benefits outweigh the disadvantages, but we do have a constant worry that something will happen to one of our animals - M is hit hard by the grief. Just something to bear in mind!