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Esty

Asperger's teens, hormones and school refusal

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Esty   

My son has Asperger's and was diagnosed two years ago when he was 12 after a period of total school refusal. After a couple of turbulent years where we fought with the LEA, he now has a place in a small support unit with only 6 students in and which only requires him to attend for 2 hours a day, which he has attended mostly successfully for two years now. In times of change, like his grandparents moving house, he will refuse for up to two or three weeks but never has trouble going back.

However, since term started in September he has only been in for 6 days. I can see no reason other than it is the start of Yr 10 and the lessons have become a little more structured - whereas before he could work to his own agenda, now he has to do English when they do English etc. I know they would accommodate him doing his own thing if he went in but he says he doesn't want to stand out from the others. We also have the offer of 5 hours of home tuition which could take place anywhere (library, grandparent's house, our house) but he refuses to engage with this as he doesn't want to be 'watched'or have to engage in one-to-one interactions which he finds quite intense. My husband had the threat of redundancy in September which may have affected my son but he now knows that this is no longer a problem.I have not been able to work for three years due to his erratic school attendance so it has a massive impact on us as a family, leaving my husband with the pressure of trying to earn enough for us. My son shows no signs whatsoever of going back to school at the moment and is sleeping and eating at very irregular times, in fact not contributing to family life at all. He does what he wants to do and nothing else, and gets very 'high' (snappy, swearing, name calling) whenever he is asked aything anything about school. He KNOWS he needs to be in and get his qualifications (he wants to join the RAF!) but seems to be unable to do anything on anyone else's terms - I'm positive that as soon as school isn't compulsory he will engage with education but he is wasting these years as he fights needlessly against the system. I think he is quite angry at himself in a way for not being able to get into school when he doesn;t fully understand why himself. he just says he 'can't'. His only structure is that he is in Air Cadets which he loves and will attend regularly and volunteer at weekends eg selling poppies, charity bag packs etc. He talks positively about going to College when he is 16 and about doing a BTEc in Aviation through Cadets.

 

So I have a couple of questions:)

 

I know that some of his problems may be worsened by the usual hormone thing. Do teens with Asperger's go through times when they are more 'Aspie' than others? So, some times they can cope but others they feel better retreating for a while? How long do phases like this last? Do we just wait it out or is that sending him the wrong message?

 

Does anyone reading this have experience of school refusal and can give me some hope that it gets better? I know he will find his own path eventually but it seems like we can't move forward at the moment and the waste of time is so frustrating - he could be getting his qualifications now (he already has a Maths GCSE unit at Grade A from Yr 9)but it feels like he just wants to stay in bed til he is 16!

Edited by Esty

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My son has Asperger's and was diagnosed two years ago when he was 12 after a period of total school refusal. After a couple of turbulent years where we fought with the LEA, he now has a place in a small support unit with only 6 students in and which only requires him to attend for 2 hours a day, which he has attended mostly successfully for two years now. In times of change, like his grandparents moving house, he will refuse for up to two or three weeks but never has trouble going back.

However, since term started in September he has only been in for 6 days. I can see no reason other than it is the start of Yr 10 and the lessons have become a little more structured - whereas before he could work to his own agenda, now he has to do English when they do English etc. I know they would accommodate him doing his own thing if he went in but he says he doesn't want to stand out from the others. We also have the offer of 5 hours of home tuition which could take place anywhere (library, grandparent's house, our house) but he refuses to engage with this as he doesn't want to be 'watched'or have to engage in one-to-one interactions which he finds quite intense. My husband had the threat of redundancy in September which may have affected my son but he now knows that this is no longer a problem.I have not been able to work for three years due to his erratic school attendance so it has a massive impact on us as a family, leaving my husband with the pressure of trying to earn enough for us. My son shows no signs whatsoever of going back to school at the moment and is sleeping and eating at very irregular times, in fact not contributing to family life at all. He does what he wants to do and nothing else, and gets very 'high' (snappy, swearing, name calling) whenever he is asked aything anything about school. He KNOWS he needs to be in and get his qualifications (he wants to join the RAF!) but seems to be unable to do anything on anyone else's terms - I'm positive that as soon as school isn't compulsory he will engage with education but he is wasting these years as he fights needlessly against the system. I think he is quite angry at himself in a way for not being able to get into school when he doesn;t fully understand why himself. he just says he 'can't'. His only structure is that he is in Air Cadets which he loves and will attend regularly and volunteer at weekends eg selling poppies, charity bag packs etc. He talks positively about going to College when he is 16 and about doing a BTEc in Aviation through Cadets.

 

So I have a couple of questions:)

 

I know that some of his problems may be worsened by the usual hormone thing. Do teens with Asperger's go through times when they are more 'Aspie' than others? So, some times they can cope but others they feel better retreating for a while? How long do phases like this last? Do we just wait it out or is that sending him the wrong message?

 

Does anyone reading this have experience of school refusal and can give me some hope that it gets better? I know he will find his own path eventually but it seems like we can't move forward at the moment and the waste of time is so frustrating - he could be getting his qualifications now (he already has a Maths GCSE unit at Grade A from Yr 9)but it feels like he just wants to stay in bed til he is 16!

Hi,I know exactly how you feel my 12 year old son is the same....april last year we had to take him out of school due to his anxieties of being there now he attends nurture unit connected to the comprenhensive school he has hoem tutor for 5 hours a week she coems with him to nurture unit and they do work there he hasnt joined in with other children yet there is 10 maximum in unit i know about the waiting and things moving slowly but since he was dx in september this year i dont worry so much as this is the way it is his obsession is the pc he is clever ....hes my youngest of 4 and my older children have traits as well but have done well in life so try not to worry too much about the future as youll go mad...so mainly school is the big issue for us and i expect will be till hes 16 ....he has aspergers forgot to say....lindy

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Suze   

we have alot of similarities, my son was also a big Air cadet and dreamed of joing the RAF.He also attended a unit at high school..............not really much to add but just wondered have you ever said enough is enough....you must attend school.......and insisted he go , how would he react?........do you think he could be trying it on to avoid school?....all the best with whatever happens.

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Kathryn   

I know that some of his problems may be worsened by the usual hormone thing. Do teens with Asperger's go through times when they are more 'Aspie' than others? So, some times they can cope but others they feel better retreating for a while? How long do phases like this last? Do we just wait it out or is that sending him the wrong message?

 

Does anyone reading this have experience of school refusal and can give me some hope that it gets better? I know he will find his own path eventually but it seems like we can't move forward at the moment and the waste of time is so frustrating - he could be getting his qualifications now (he already has a Maths GCSE unit at Grade A from Yr 9)but it feels like he just wants to stay in bed til he is 16!

 

Well I have an ex- teen with AS but as she is a girl I can't really comment on the hormone thing as it affects boys. I can say though that she did retreat at around 15 when school had become too much and was unable to engage with education or anyone outside the home for over a year and it was a slow road back. She did manifest more outward signs of autism and was anxious and depressed and actually quite ill mentally. Now things are a lot different and she is at university and enjoying it. So for us it did get better - eventually - and not having gone the conventional educational route does not seem to have done her much harm academically: she's holding her own quite well.

 

We waited it out, but whether the same should apply to your son, I don't know. My daughter wanted to go back into education but was depressed and traumatised and we couldn't rush her until she'd overcome that and built up her confidence. She would not have been able to cope with it: she was 20 before she was able to do any serious academic work. If your son is suffering from depression or is severely phobic about school then this probably needs to be addressed before he's ready to return. Are you involved woth CAMHS?

 

If however he's capable of emerging in two years' time with a clutch of GCSE's and is just "trying it on" and needs to overcome the initial fear and develop a regular routine of going to school, maybe it is time to get a bit tough. He's obviously capable of doing things on someone else's terms and responding to discipline and structure or he wouldn't be able to hack being in the Cadets. Is there some way you - can harness this passion - make him see that in this competitive world it's vital that he gets good qualifications and that the RAF would need him to demonstrate that he can work hard and apply himself. Maybe someone he respects in the Cadets can tell him this.

 

I have not been able to work for three years due to his erratic school attendance so it has a massive impact on us as a family, leaving my husband with the pressure of trying to earn enough for us.

 

His behaviour is obviously taking its toll on your family and he is in control of you all. That's not a criticism, just an observation based on what you've said. I do sympathise because for a long time our lives revolved around trying to keep my daughter stable and not cause any upset, and our family life suffered as a result. Maybe it's time to say, "enough"? You need to work and he has been offered two reasonable education alternatives (unheard of in a lot of LEA's!). Can you insist that he choose the option which is least abhorrent to him and give it a go for a few weeks?

 

Good luck though - easier said than done I know. If all else fails, try not to worry, I'm a great believer in things working out in the end!

 

K x

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bid   

Hi Esty :)

 

My son was out of school for 6 months when he was 14/15, not as a school refuser but signed off on medical grounds because he had a breakdown.

 

He was very unwell and regressed into his autism, but I still perservered with a visual daily timetable for him, detailing what time he had to get up, what time slots he could go on the computer, meals and bedtime. Of course, he didn't follow it perfectly and we had good and bad days, but it was there as a non-negotiable part of his daily life. I also did my best to get him out of the house once a week. After 3 months he had 4 hours of home tuition a week in two subjects, which he was expected to do.

 

I agree with the other posters: if he can cope with Air Cadets, then it would suggest that he can cope with some kind of structured teaching too.

 

I do know how very hard it can be with a young person at home. But you are still the adult in the family dynamics. Whatever he does in the future, and certainly if he joins the RAF, he will be expected to follow routines and do as he is told. As your son isn't unwell, then I also think he should be expected to be responsible for certain chores, and it is never too early to build on independent living skills such as doing his washing, making a simple lunch and so on.

 

Good luck.

Edited by bid

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Esty   

Thanks everyone for taking the time to read and reply :thumbs:

 

I do think some of you are right, he does exert a certain amount of control over us because when he used to have meltdowns they were vicious. I really don't want to go back to days where he was physically threatening (he's over 6ft), where I had to watch everything as he would take and hide things he thought we needed (purse, glasses etc) to cause maximum disruption. He wouldn't let us sleep or watch TV ('if I can't have what I want, neither can you'). He was horrible to his older brother (they have a more mature and calm relationship now) Our life was hellish. Since he was diagnosed he is much more agreeable to 'deals' (eg you can have a lift if you take the dogs out with me, your friends can come in if you take a shower) etc, before he would scream and yell about being 'bribed' to the extent that at one point I wondered if he had PDD. The problem is, very little matters to him, and what does matter we already use as tools to get the basics accomplished(hygiene etc) When it comes to school refusal, there is NOTHING he values enough to go in. You could offer him one hundred pounds some days and he wouldn't go. Before he was diagnosed we tried sanctions but at one point he had virtually nothing in his room and had no money but still would not go in. He doesn't care about having clean clothes so wouldn't see the need to learn to do laundry etc. I can see that his AS is affecting him at the moment as he doesn't want to do the Cadet's Remembrance parade any more (people watching him!) and he may be realising that the RAF will be too much for him.

 

I spoke to him this morning and his view of the world is that basically he won't do anything he doesn't want to. He will only do things he enjoys. I have explained to him hundreds of times that the world does not work like that, but he basically thinks the rest of us are fools for doing jobs we don't like for money! He has no pocket money when he doesn't go to school, so he is skint but that backfires as then he can't go out with his friends so becomes more isolated and sits in his room - we obviously want to encourage him to be as social as possible. He doesn't become violent any more, he just seems to retreat and refuse to speak if he doesn't like the topic, which is actually more worrying.

 

In answer to points raised: We were involved with CAMHS but they signed us off as he was attending school and had no other issues. I mentioned going back but it's quite clear he will not engage with them at the moment. We do claim DLA but not Carer's Allowance as I do some exam marking infrequently and it would be a nightmare having to keep making fresh claims as it would look like one week I was earning eight hundred quid but then I won't earn again for a few months.

 

He can cope with Air Cadets but that's because he WANTS to. This has always been the most frustrating thing for us - he can overcome his sensory issues sometimes if he wants to but there has to be something in it for him. He doesn't value education even though his Dad and I are both teachers and his brother is a high achiever academically. I think he may also be feeling left behind as all his friends are 2 years older and are in College and he is the last of the group to be left in school. He is very bright and already has a GCSE Maths unit at Grade A (taken two years early) so I don't think he feels in competition or that he cannot live up to his brother, and we have certainly tried to make him see the benefits of education as well as qualifications.

 

He's also let slip that he doesn't choose to stay awake all night, he can't actually sleep, and this is why his eating patterns and sleep patterns are all over the place. Despite apparently being in bed all night, he is still shattered in the morning. I am thinking of looking into melatonin and a SAD lamp perhaps. He is quite out of sync at the moment, not hungry at normal times etc.

 

There's no way on earth we could 'make' him go into school. I can't even think of a way we could try as, like I said nothing matters to him enough. 'You get up now and go to school or.....what?' Nothing you could say would mean anything. This is a child who once didn't go for a day out to the zoo because he threw a crisp packet out of the car and refused to pick it up when I asked. He chose to miss a day out rather than comply. He will cut his nose off to spite his face to a degree you would not think possible!

There are no sensory problems at school, no changes of staff, no bullying (it's a group of 6 kids, he's only there for 2 hours and there are no breaks when they are away from the teachers). He just doesn't want to go :(

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rannoch   

Nothing you could say would mean anything. This is a child who once didn't go for a day out to the zoo because he threw a crisp packet out of the car and refused to pick it up when I asked. He chose to miss a day out rather than comply. He will cut his nose off to spite his face to a degree you would not think possible!

This zoo incident reminds me (AS female) of a similar incident from my own childhood. It might shed some light on his motivations. My parents' sanction for my behaviour was that we wouldn't go on days out, e.g. to the zoo or the beach....so I played up, because I didn't want to go. They assumed I'd want to go to the zoo, as I love animals, but I didn't like the thought of the change in routine, crowds, sensory issues and social demands of a family day out. So I actually got what I wanted, which was to stay in and not have to engage with others. My parents interpreted this in the same way as you did. As soon as I got old enough to stay at home unsupervised, my family would leave me at home rather than have to spend unpleasant days out with me (they weren't going to let me dictate what they did in their leisure time). I much preferred this arrangement, although looking back, I would have benefited from the practice in social interaction and appropriate behaviour in a family group. Missing out on this practice has made adult life harder. But going out for fun or spending quality time with family would not have occured to me as reasons to participate; as an adult, I'd say this is an extremely self-centred adolescent attitude and should not be indulged. I actually wish my parents had forced me to practice social and interpersonal skills.

 

Perhaps you'll need to rethink your sanctions and approach to your son's behaviour from the point of view of acting in his long-term best interests. Remember that things that adults and NT children consider to be "fun" or a treat, e.g. a day out, are probably not your son's idea of a good time. NT kids respond to sanctions, praise, rewards and encouragement, but it's likely that your son's motivations and reasoning are very different from a typical NT teen of the same age. Keep talking to him and find out more about his thought processes. You'll probably be surprised.

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bid   

I've remembered a strategy that was suggested to us when my son was a bit older, about 17 or so, by his CAMHS psychiatrist.

 

I guess it's a form of back-chaining. Talk with him about where he wants to be (perhaps in his case in the RAF? Or living on his own. Or just having more money, etc). Then ask him what he thinks he needs to do to get to where he wants to be. Then you can start to discuss how he thinks he can make this happen.

 

I know it sounds simplistic written down like that, but I think the idea is to stop him feeling in typical teenage style that the adults are 'telling him what to do', and rather to encourage him to take ownership of his situation and to think things through realistically. I would also make it visual too, by writing things down as you talk so that he isn't faced with a barrage of 'talk', but can actually 'see' what he is thinking and saying.

 

HTH

 

Bid :)

Edited by bid

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baddad   

This zoo incident reminds me (AS female) of a similar incident from my own childhood. It might shed some light on his motivations. My parents' sanction for my behaviour was that we wouldn't go on days out, e.g. to the zoo or the beach....so I played up, because I didn't want to go.

 

Totally agree... It may not even be he did NOT want to go, just that he wasn't THAT fussed, and having the last word was more important to him. If you take the view there is no way you could 'make' him go to school and accept that he doesn't 'want' to go to school, then as far as he's concerned it's a done deal and he won't be going to school.

 

People do not cut their noses off to spite their faces: they may do it once or twice to establish control, but if they succeed in establishing control it will have been very worthwhile to do so. They are not 'spiting their faces', they are actually being very powerfully rewarded with the establishment, reinforcement and acceptance of controlling behaviours that may well be the bain of their families lives (and potential extended family when/if they find partners who are willing to fall into the same trap as their parents) for years to come. Find what does matter to him and take it away. Do that consistently. He will change.

 

L&P

 

BD

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Esty   

Good points, well made.

 

I have thought of one thing that DOES matter to him (bizarrely, because it involves crowds, chaos and noise) and that is the Download Festival. I took him this year and he really wants to go next year - however, at his age he MUST have an adult with him and no-one else he knows would go apart from me. I told him a couple of days ago that 2 quid will get put in the Download savings jar each day he goes to school - if there's not enough money to buy tickets, we're not going. It must be preying on his mind as he came downstairs before to show me some youtube clips of bands who played this year, so he's been looking for them. I think I'll work out how many days he needs to do for tickets, for a new tent etc and see how many days are left of the school year...

 

I've tried to talk to him about what he needs to make something of himself and earn money but his answer at the moment is that he doesn't care. He knows he needs certain qualifications to be in the RAF and he knows he needs to have so many GCSEs to get into College but his answer is that he doesn't care. I'm sure he does, but he also lacks the imagination and foresight to really think about and understand what life would be like on the dole and that it wouldn't even keep him in cheese and chicken nuggets let alone get internet access...

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Esty   

Bid, just read your reply again and will try to broach the subject again more visually - you are right with the 'talk' thing - he just switches off.

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baddad   

Good points, well made.

 

I have thought of one thing that DOES matter to him (bizarrely, because it involves crowds, chaos and noise) and that is the Download Festival. I took him this year and he really wants to go next year - however, at his age he MUST have an adult with him and no-one else he knows would go apart from me. I told him a couple of days ago that 2 quid will get put in the Download savings jar each day he goes to school - if there's not enough money to buy tickets, we're not going. It must be preying on his mind as he came downstairs before to show me some youtube clips of bands who played this year, so he's been looking for them. I think I'll work out how many days he needs to do for tickets, for a new tent etc and see how many days are left of the school year...

 

I've tried to talk to him about what he needs to make something of himself and earn money but his answer at the moment is that he doesn't care. He knows he needs certain qualifications to be in the RAF and he knows he needs to have so many GCSEs to get into College but his answer is that he doesn't care. I'm sure he does, but he also lacks the imagination and foresight to really think about and understand what life would be like on the dole and that it wouldn't even keep him in cheese and chicken nuggets let alone get internet access...

 

Hi Esty - I think that's a good idea in theory but may be a bit more difficult in practice... Firstly, it's such a long-term goal it may not have meaning, even if it has meaning (iyswim) purely because it doesn't seem imminent. Secondly, if there have been precedents set in the past where rewards and expectations have been established but the sanctions not followed through, he is likely to think this will be another situation he can control - either by having a 'meltdown' and getting his way, or perhaps by some token compliance in the week or two leading up to the event and a good old play on your conscience, because he will know you know how much it means to him. I'll be honest and say that I'd have trouble 'delivering' on a sanction for such a major event with my son, and peeps around here will tell you I'm no push over about that kind of thing! If you think it can work and you can stick to your guns it's got to be worth a shot, but if you can think of something that might be equally important but more immediate as a sanction I'd try that first... For many kids, access to their games console, TV/DVD and computer (esp internet) are the big guns, but the catch 22 with that is it sometimes has to be all 3, or they will simply trade of the sanctioned item for one that isn't - 'oh well, if I can't play the X-Box I'll go on Facebook instead' sort of thing...

 

Hope you can find something that turns the tide soon.

 

L&P

 

BD

 

Oh PS: One other thought that came to mind if you go with the festival tickets: Start with a visual indicator of success and 'backchain' from that - i.e. if you could have a stack of tokens or coins representing the tickets, take one AWAY when he doesn't go to school, and then make him 'earn it back' with a predetermined period of attendance... there are downsides to doing it that way too, as he can 'play the numbers', but at least you're winning the longer battle. He may well reach a point where it is clear he's lost too much to 'make up' and then you're back to square one, but that's equally possibly whatever way you approach it. The big advantage of doing it the back to front way, though, is that the goal - in true back-chaining style - is always tantalisingly within reach (providing he doesn't lose too many), and the closer the carrot the stronger the smell of success!

Edited by baddad

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