15 year old son recently diagnosed with ASD, at my wits end

It's been a long hard road, but after 3 years with CAMHS my son finally has a diagnosis. Part of the lengthy process has been because his careworkers kept changing but part of the reason is also because some of them couldn't understand why he seemed to cope with school i.e. his behaviour at school appeared 'normal'. Anyway, after all the assessments they have finally come to the realisation he does have ASD. This was communicated to us about a month ago but he has not yet been told. We would prefer his careworker or someone to tell him this so they can hopefully better communicate it than us.

Life at home is evermore difficult. He is totally obsessed with his 'devices'; Xbox and Ipad and very rarely leaves him room. I've had to put time limits on the wifi otherwise we would never be able to get him off them, but this causes issues. He shouts his sister when he knows it is about to disconnect him and tries to get her to extend it as she knows the password. If I go in and ask him to come off he swears at me, shouts, stamps his feet and if it disconnects, he'll throw his Ipad and throw his things all over the floor, sometimes this might be drinks and food he deliberately throws on the floor.

At the moment he is supposed to be revising for his school tests (he is coming to the end of year 10, and next year is GCSE's) but getting him to do any study is near impossible. He is quite clever but puts absolutely no effort in. I dread him doing his GCSE's next year as even though he is capable of doing well, with his current behaviours I don't think he will do any revision and if we turn off his Xbox/Wifi he will probably wreck the house. To make things worse he has said he want's to go to the Sixth Form my daughter to goes to and won't even look anywhere else, but at this rate I don't think he will get the grades he needs to get in.

When he has a 'meltdown' about coming off his devices he rips his clothes, to the point where they cannot be worn anymore. He has a football 'blog' on Instagram and does a post every night. I warn him how much time he has left to post his daily post, but if he knows it is about to go he starts shouting and then can be when he starts ripping his clothes, if we either remove his devices or access to the internet. Last night he totally ripped a pair of adidas shorts and an adidas top which are ruined. Last week he ruined to pairs of Calvin Klein boxer shorts, prior to that he has ripped school trousers, and other t-shirts. I'm at my wits end and don't know how to get him out of this cycle of behaviour !! It's impacting massively on the family, especially my daughter who is continually on edge.

Any advice would be greatly appreciated...

Parents
  • I can understand why you might be keen not to have your son glued to a screen all the time, especially when there are other important things you feel he should be doing, but his alone time in his room with his Ipad/xbox etc may be what gets him through coping the rest of the time. Especially as you say he seems fine at school; it is common that us people with ASD might be able to put all their energy into coping through a school or work day, but desperately need to decompress at the end of the day/at weekends. By taking that away by physically limiting his wifi access you might be just taking away his coping mechanism, so not surprising that meltdowns than ensue (please try and remember his reaction is not because he is trying to give you a hard time, but because he is having a hard time coping with your demands).

    You say you want to get him out of the cycle of behaviour, but he's reacting to what you're doing, so of course if you keep doing the same things (that are obviously not having the desired effect), he's going to keep reacting the same way. You obviously need to find another way of doing things. Perhaps it might help to come up with some sort of routine (after your son has had some initial time to decompress immediately after school) that incorporates short revision periods (people don't really concentrate for more than 20-30 minutes at a time anyway) before being allowed back on his devices. If you don't already have them, get some of the revision guides for each subject because that will break the revision down into manageable chunks; it doesn't seem quite so difficult to be asked to specifically complete two pages of a revision guide than it is to say, revise an entire particular topic. It might help to print out any schedule and put it up where he can see it so he has a clear idea of what's expected (you could include specific time for him to write his blog post in this to encourage him to complete it at a reasonable time). Time based reminders are often helpful because autistic people aren't good at task switching and it gives them time to prepare for the next thing, but only if you can be non-confrontational about it; it might help to phrase it as a positive than a negative-so rather than 'in ten minutes you have to come off the computer', phrase it as 'in ten minutes I want you to start working on your revision'.

  • Thanks for replying... we are currently seeing a family therapist through CAMHS. Based on his advice we are trying to implement a 'timetable' ( if you can call it that) where he does homework/revision after getting home from school, has dinner and then is free to go on his devices. This was given to him as an 'announcement' in a positive way explaining that by getting it out the way early on he can then go on his devices and we don't have to keep interrupting his 'fun' to call him for dinner, or to ask him to do his homework etc.

    The problem we always have with this is that if we specify times, or an amount of time, than he sees it as set in stone. As an example 3 years ago when we were struggling with him getting ready for school (not because he didn't want to go) we made a list of the things he had to do i.e. wake up at 7, breakfast at 7:30, get dressed at 7:50, but since then he finds it hard to deviate from the times. So if we need to leave early and ask him to start getting dressed, he will not start to do so until 7:50.

    It's difficult finding the balance. I have bought every revision book available, I've bought index cards for him to create flash cards. I've printed example past papers for him to work through so as to highlight any small topics which he needs to go over. He's always on Youtube watching various videos and I've even recommended he find some short sharp revision clips, but he's not open to it. I think all the time he thinks his friends might be on.

    He's in the middle of his end of year tests at the moment, so I drew up a realistic schedule with the exams shown and which subject I want him to go over on a particular night, but getting him to do it is difficult. His Ipad is constantly on by his side.

    I only have to ask him something once, and I am 'nagging'. The difficulty we have too is that if the wifi stayed on constantly, he would sit on his Ipad till really late. We would be asleep but then he would wake us when he gets ready as he cannot do it quietly and walks back and forth in the bathroom and on the landing before going to bed.

  • But seriously, I think you are trying to avoid the elephant in the room. Why haven't you discuss it with him yet? The care worker will be surprised that you delegate such important thing to a stranger, in a way it is a message to your son, a very hurtful one, have you thought of that? From his point of view it could look like you are feeling awkward about discussing with your son that he has a disability... There are many people on this site going through diagnosis, it is a cathartic moment and a process that takes time to process and to rebuild a new positive identity. I can't look for it now, but there are a few studies that show mental health and coping outcomes are significantly better for people who build positive self identity after the autism diagnosis. There are a few 15 years olds on this site now, reading this thread, that might be able to chat with him and support him through processing of the diagnosis. Direct him to hear.

    But I think you need the same process, to re frame and rebuild your concept of what it means to be autistic, and what it does not mean. The diagnosis process is distressing and draining for parents as well. I totally sympathise. Why can't you talk about it?  I don't mean to criticise you, you need support with this as well, it's bewildering and information out there is of very variable quality. It might help your son if you researched a little about neurodiversity and the culture and identity of autistic adult community. 

    Maybe someone can advise about a good autistic young man youtuber

    This is a bit too young, there is one boy here about his age, https://vimeo.com/216052066

    This blog has a video on how to deal with the diagnosis https://www.autistamatic.com/videos

    Boating_taxonomist advice is spot on, she made several excellent points. Especially the bit about his coping and you interfering with that. He really need ways to process and relax after the school day, so he might need a break after school and then the routine of revising in short bursts would help. If he settles into a routine, it's great. He needs to find ways that work for him, based on autistic way of being and autistic priorities of coping. An autistic speaker Sara Hendrickx say that to cope better with her work and demands of professional of life she needs to become 'more autistic', have more rigidity and routine in small things to free the bandwidth to cope with the big thing. So if he gets to a routine of revising well, why do you need to worry about being flexible and living the house earlier? Cancel living the house all together until he gets results. Generally, in autistic life you have to focus on what matters and let go of the rest. Yes, aspies are nocturnal, noisy and interact through devices. Channel this. Other aspies might be more helpful for him in this that any NT family therapy. It should not really be about normalising and controlling him. You might damage your relationship this way.

    I meet a lot of adults on autism forums, mostly from US, estranged from their families because of the controlling and  'normalising' stance they took (i.e. forcing the ASD to comply with the appearance of NT normal' behaviour, with NT norms, rather that functioning well as an autistic person and feel well on the inside. 

    There is autism show in Birmingham this week-end, with a lot of autistic speakers, maybe you could both explore it together?

Reply
  • But seriously, I think you are trying to avoid the elephant in the room. Why haven't you discuss it with him yet? The care worker will be surprised that you delegate such important thing to a stranger, in a way it is a message to your son, a very hurtful one, have you thought of that? From his point of view it could look like you are feeling awkward about discussing with your son that he has a disability... There are many people on this site going through diagnosis, it is a cathartic moment and a process that takes time to process and to rebuild a new positive identity. I can't look for it now, but there are a few studies that show mental health and coping outcomes are significantly better for people who build positive self identity after the autism diagnosis. There are a few 15 years olds on this site now, reading this thread, that might be able to chat with him and support him through processing of the diagnosis. Direct him to hear.

    But I think you need the same process, to re frame and rebuild your concept of what it means to be autistic, and what it does not mean. The diagnosis process is distressing and draining for parents as well. I totally sympathise. Why can't you talk about it?  I don't mean to criticise you, you need support with this as well, it's bewildering and information out there is of very variable quality. It might help your son if you researched a little about neurodiversity and the culture and identity of autistic adult community. 

    Maybe someone can advise about a good autistic young man youtuber

    This is a bit too young, there is one boy here about his age, https://vimeo.com/216052066

    This blog has a video on how to deal with the diagnosis https://www.autistamatic.com/videos

    Boating_taxonomist advice is spot on, she made several excellent points. Especially the bit about his coping and you interfering with that. He really need ways to process and relax after the school day, so he might need a break after school and then the routine of revising in short bursts would help. If he settles into a routine, it's great. He needs to find ways that work for him, based on autistic way of being and autistic priorities of coping. An autistic speaker Sara Hendrickx say that to cope better with her work and demands of professional of life she needs to become 'more autistic', have more rigidity and routine in small things to free the bandwidth to cope with the big thing. So if he gets to a routine of revising well, why do you need to worry about being flexible and living the house earlier? Cancel living the house all together until he gets results. Generally, in autistic life you have to focus on what matters and let go of the rest. Yes, aspies are nocturnal, noisy and interact through devices. Channel this. Other aspies might be more helpful for him in this that any NT family therapy. It should not really be about normalising and controlling him. You might damage your relationship this way.

    I meet a lot of adults on autism forums, mostly from US, estranged from their families because of the controlling and  'normalising' stance they took (i.e. forcing the ASD to comply with the appearance of NT normal' behaviour, with NT norms, rather that functioning well as an autistic person and feel well on the inside. 

    There is autism show in Birmingham this week-end, with a lot of autistic speakers, maybe you could both explore it together?

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