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Jan63

Finally made it!

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Hello everyone,

 

After years of reading the forum and weeks of trying to register I have finally managed to do it!

 

My son is 14 and has a diagnosis of aspergers (now in question - poss PDA!!) He does not currently go to school, following a rapid decline over the past few months. Spends all day (and night) in bed with his laptop, only getting up for food. We are very concerned about him. I have always found the forum to be a wealth of information and support and will post more on topic pages.

 

Really looking forward to 'talking' to you all.

 

Jan

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Hi Jan,

 

I have a son too, 12 y.o. We start his assessment tomorrow, though he has suspected aspergers. So far, he still goes to mainstream school, and after some adjustments, such as he comes home for lunch, he is doing pretty well. But he does spend most of the weekends on the computer.

 

Look forward to talking to you,

 

Diane

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Depression has been mentioned by Consultant. Unfortunately, as he refuses to engage with anyone it will take some time for him to be diagnosed. We are resigned to the fact that his diagnosis and recovery (from this particular crisis) will be a long and slow process. I wish his school would understand this, as they want him back to start Key Stage 4 by June.

 

Thank you both for your welcome.

 

Jan.

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This does sound like depression as he used to this routine of sleeping all time he won't want to do anything else as with depression lose motivation in every part of your life the diagnosis hanging out in the air probably isn't helping things making matters worse as isn't stable maybe another routine needs to be put in place structure to help step by step build up lost motivation energy ??? Have thought of medication for the depression has the consultant mentioned this? Is he agorphobic?

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I can personally relate to your son as I been in that stuck mind set myself with no motivation energy exercise has helped me feel " refreshed" "alive" and has relieve pressure / frustration of depression as a whole your son probably at a loss confused of what to do with how his life is how he feels inside he struggling

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He has completely withdrawn from life. It has been coming on for months, but really accelerated in the past 3 months. He does not think he has a problem, just wishes we would all leave him alone. Consultant psyc. wants to give him medication, but he will not accept any help at the moment. We are trying to reintergrate him into the family, but it is a slow process. School says he does not need a statement unless 'special school' place is required and we know that he would hate this. Thanks for your advice smileyK. I think you are right - he is depressed - but how do we convince him??!!

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Jan as someone with AS and who suffers with clinical depression and have done so throughout my life including at your sons age, I think the simple answer is you can't convince him, he has to see this for himself.

 

I would also say that my experience of medication in treating my depression have not been good. I have found that they simply flatten out my moods which might be good at stopping me getting really low and at times suicidal, but anti depressents stop me from being at my best and as such being able to work things through in my own mind and come to conclusions as to what I should be doing to improve my situation.

 

If he wants to talk then listen to him, if he wants to continue as he is then though it is not a very constructive position to be in and I am sure it is a reflection of running away from rather than facing up to issues which he will eventually have to face I suspect importantly he sees it as a safe place to be at present.

 

I would try to get him to be self reflective and to explore how he is feeling at present. I know that self reflection is my strongest tool in working with my depresion. I know what I feel like when I am in good form and it is important that I recognise and monitor this all the way through to my lowest states, by doing so i can be proactive in controling my state of mind to a large extent and this is a better form of protection against the worst aspects of depression than retreating into a morose state. I think your real concern rightly is that of him becoming isolated. There is a big difference about being in a comfortable environment and self protecting and retracting into complete isolation. When i get to this state my partner takes a firm hand and tells me to be more interactive with her and my son, I don't always apreciate this at the time but I do when I am feeling better. Take an interest in what he is doing no matter how insignificant it may be.

 

I find that depression is very cyclical and winter months are a bad time. It may well be the case that he needs to emerge from this period and I have always found getting out and doing a bit of exercise can often help with this process. If your son feels he needs to be in control then far better i think he tries approaches such as exercise before you go to external sources such as drugs, just a few thoughts, I suspect it is not easy being around him when he is in this state. This might also be his first depressive cycle and as such quite a frightening position to be in, with experience I can see them for what they are, but if he is depressed for the first time be patient its not something you can kick out of. Trying to do so and please others feels very false and fraudulent, rather it is something you need to work your way out off, I have never found anything which was a magic bullet in this respect other than time.

 

Best wishes.

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I totally agree with lancs lad on fact of you can't push force or convince your son he is " depressed" he will reach this conclusion in his own time and way trying to push or force this on him will only make him feel worse matters insdues worse in his head and life so I'd let him breathe give him space back off. Common reaction with depression is deny igorn turn blind eye and run as easier to bear manage to pretend it doesn't even exist! He will come round maybe fresh air walk everyday will do Him some good help his state of mind give him energy back! ? Maybe make timetable of things he could do other than sleeping playing on computer come up hobbies ideas together? He needs feel sense of " control" once he feels this start feel " better" as such! I couldnt see no way out escape route other than sleeping comfort/emotional eating at night as had no self esteem which added to depressive thoughts/feelings made me hate me and my life even more! :( it will take time to build him up step by step again! Needs gentle touch/approach gentle persuasion /TLC! I can see both sides yours and your sons I can empathise as I've been in that horrid dark foggy place where cant see nothing but doom and gloom! So hard see past that see future minute by minute let alone a future it too scary think about! He may need constant emotional support / reassurance even though natural reflex response is push away most depressed teenagers AS or not close right down back away withdraw from family and friends as easier to deal with aint got find answers or explain when haven't got the words!

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All I can really advise tell you is be consistent he may " surprise" you and reach decision of wanting support / help only he can tell you when this time will be no one else can really! As personal choice! Alot of depressed people refuse help/ support as part of denial and also feel ashamed,confused and lost! It is common to not want help/ support he may come crisis desperate point where he asks you for help!

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hi and welcome to the forum.

 

has your son said what is troubling him, because could that be a big trigger. I have certainly been like your son recently and still am at times. the only day got up last friday cos had appointment, yesterday i just lied in bed crying but texting someone that helps me and im seeing her friday . i should of been about volunteering yesterday. i am struggling to motivate myself but really trying

Edited by Special_talent123

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Hi, My sons nearly 13 and is the same he loves his pc doesnt go to mainstream only 2 hours a week at nurture unit and he doesnt like that has tutor with him its nearly 2 years since hes been in mainstream full time.....i know how you feel .......

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You might want to get in touch with the Elizabeth Newson Centre at Sutherland House School in Nottingham. It was Elizabeth Newson that put forward the theory for a branch of ASD which she termed Pathological Demand Avoidance. They do see children and assess them for this. I don't know if you have to pay for it.

They can also put you in touch with a support group of other families.

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Thank you all for your replies, you have given me a lot to think about. I would certainly like to let DS come out of his depression without the aid of medication. I love him very much and would be happy to support him for however long it takes. Problem is, no diagnosis means I can't be sure what the problem is. I worry that by giving him space to recover from this crisis I may be doing more harm than good. He will not leave the house. He appears to be terrified, mostly that people will see him. the consultant will eventually diagnose something,(she is thinking depression and or aspergers/PDA) but it is a long process as he will not talk to her. She has said she will not give up, but we have not heard anything for a week now - this is, of course, how the NHS works. I find it so reassuring to hear from you all that this will not be a permanent state of affairs, also that in the 'aspie' world my son is perfectly normal!

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has he expanded explained further on him being scared afraid of people seeing him when he leaves the house? or is this what you have observed? he has not told you this? im glad consultant is carrying on to sit and wait her time this shows good professionism!do you think your son could be agorphobic or have an underlying anxiety disorder aswell as depression going on??? i think it common it lot of AS peeps that people are 'looking at them' on the street laughing at them talking about them just paranoia type thoughts which are irrational but become 'alive' 'real' in our heads in becomes distorted twisted especially if got other issues going on in the background such as depression /anxiety make this more intense! so him in the house he trying to hide from the world as scared he'll be judged critised by others in public/society? has he been bullied in past at school? had any situation/experience that make him react/feel like he does? which could be linked/connected to his thought process?

 

no official diagnosis does feel like unanswered questions of what do i do for best? where go next? what steps do i take next to help him? i think giving him space for him to recover may give him thinking time he needs process everything as got so much to deal with right now if are worried stressed about what this may do keep record/log of his behaviour etc any changes all can do if he doesn't want help/support at moment! have you discussed between you and consultant about what steps can make without consultant stepping in right now to relieve some of depression etc??? as may have ideas/knowledge?

 

your hands are well truly tied you are in rock and hard place! you kind of caught in middle of no where floating Around

 

i would chase up consultant as keeping in contact would be good idea between two of you open network even if your son decision is closed minded right now about facing up to things head on! he probably scared frightened freaked out completely even though he never admit that to you inside he flipping out crying out for help i know i was and 'pretend' to cope/manage when everything around you falling apart so messy! when have depression everything feels like an 'tiring effort' and challenge too much too far sometimes pushing is needed not wanted!

 

does he speak anyone how he feels express his emotions/feelings??? in any way? with depression he needs some way no matter what it is writing drawing etc to relieve internal pressure building up!

 

 

XKLX

 

 

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I received a letter from consultant yesterday. She says that DS is underweight (he is definitely not), he is not depressed (based on a 10 minute 1 sided conversation) and he has probably got PDA in addition (or in conjunction with) ASD. She offered no advice and said she will see him in two or three months time! In other words absolutely no help at all, just another condition to research and adapt to Meanwhile he is still sitting in bed, refusing to talk about anything. Just don't know what to do next!!

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Hi Jan63 and welcome.

 

This must be a very worrying time for you, it's not easy to see your child withdrawing. The trouble with sitting at home all the time and not going out is that it can become a habit and the longer it goes on the harder it can be to break. Does your lad have any kind of routine when he is at home, does he have a tutor or any kind of educational input at the moment?

 

If it was me, I personally wouldn't allow him to stay in bed all day. Would it help to write out a timetable for him for the week, listing what would be expected of him at certain times during the day? Would he cooperate in going out for a short walk each day if it was written into his 'timetable' and he was rewarded afterwards. What happens about food, do you take it up to him? I would at the very least expect him to come downstairs, properly dressed, to eat with the family, progressing on to helping out with laying the table, washing up, etc., to get him into the habit of taking part in activities again. I know it sounds tough, and because I don't know your child, of course, I don't know how hard this would be, but if it was mine I would remove his laptop from him for periods of time during the day and would expect him to do other things and only when he has cooperated would I return it to him. if I were to sit and wait for my lad to volunteer to go out and do things then I'd be waiting forever, he needs an incentive to get going.

 

Perhaps when you lad has managed to start doing a few things because he is made to then he might find that it is possible after all and might feel better about himself for having achieved something. I wouldn't allow my lad to sit and wallow in bed all day while I waited on him (not suggesting that this is what you are doing at all), I just would expect him to get up, as hard as it might be because if I didn't make him he wouldn't do it.

 

Sorry if this comes across as harsh and I'm certainly not criticizing you, because I don't know enough details to know the full facts, of course, but I just think advice to sit it out and let him come out of it when he is ready is a bit dangerous because, as I said, it could escalate to a point where it would be impossible to reverse it.

 

All the best.

~ Mel ~

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If you can tell me how to make a large 14 year old boy do anything that he does not want to i would be delighted to try! He flatly refuses to do anything, other than come downstairs for food. His response to any request, or demand, or suggestion is instant anger. If pushed he becomes violent.

When we try to take his laptop away he goes berserk, destroying the house in rages that last for hours. We have been advised not to remove his laptop as it is his attachment object. Quite frankly I am at the point of giving up. I don't think I can be the right person to care for him If others think it is so simple to sort him out, because it is quite beyond me. I know that you don't mean to critisize and thank you for trying to help, but frankly I am teetering on the edge of despair so I am feeling a bit sensitive.

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I don't think it about criticising pointing finger of blame at you at all that's not what it is about but some point structure / routine is craved especially when you have ASD main central part of everyday life he probably angry due to frustration of depression and expressing himself of getting his life back on track he may need gentle reminder nudge in right path / direction

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It's not about being judgemental of you just trying to "advise" have you got in touch with NAS about advice of how get your son back on track? He needs routine/ structure get back to " normality" we can appreciate understand your feelings of despair , pushed to limit edge as stressful family situation

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I totally agree with ox girl ( mel) as your son will get used to it come round I been there myself just being left to own devices to sleep when depressed sets pattern hard break out of until someone points out it unhealthy to sleep all day as when depressed feel tired so need for sleep becomes more & more until becomes everyday all day he trying to escape his world feelings/ emotions through computer so don't have face reality of depression head on! When I had depression it was easier to igorn than to listen others around me I clanked them carried on! Thought I knew better until became out of control worse with anger violent outbursts / meltdowns lasting hours like your son I became physically aggressive to my mum especially! Was bad

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We not saying it easy simple to sort as complex complicated situation to work through but as a family needs be worked through with support! I can see you struggling to cope my parents were same desperate to find way through! Living someone with ASD never easy simple to get understand sounds like his anger needs addressing ASAP as connected linked to frustrations of depression!

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If you can tell me how to make a large 14 year old boy do anything that he does not want to i would be delighted to try! He flatly refuses to do anything, other than come downstairs for food. His response to any request, or demand, or suggestion is instant anger. If pushed he becomes violent.

When we try to take his laptop away he goes berserk, destroying the house in rages that last for hours. We have been advised not to remove his laptop as it is his attachment object. Quite frankly I am at the point of giving up. I don't think I can be the right person to care for him If others think it is so simple to sort him out, because it is quite beyond me. I know that you don't mean to critisize and thank you for trying to help, but frankly I am teetering on the edge of despair so I am feeling a bit sensitive.

 

Of course I understand that you are sensitive and none of us could possibly say you are not the right person to care for your son, how on earth would we know. I have a large 18 year old myself, so I do understand what it is like!

Who advised you not to remove his laptop from him? To me, advising you to give in and give him what he wants if he kicks off is totally counter-productive. All it does, surely, is encourage him to kick off in future when he doesn't get his way. How about if you were to let him know that if he wants lunch then he must come down and help to prepare it? If he doesn't come down to help, then no lunch! He might kick off at first, but maybe he would come round?

 

~ Mel ~

Edited by oxgirl

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Jan I have been in similar situations as a foster carer. It may well be a case that this is not depression but him exerting extreme control. If he is throwing in effect emotional tantrums I would say this is about control more than depression. If he was depressed his behaviour would be very flat and lacking in emotions. I think you need to be confident in the fact that you are the adults and that the way he is behaving he is definatly acting like the child, but in a way this should be expected it is how it manifests itself which is the problem.

 

As the adult you therefore have the right to make a call as you see fit. You are not obliged to feed him for example, rather I would provide the means for him to eat and this would not be a ready meal in my book but some potatoes, raw meat and a few vegetables unprepared. If he cant cook leave out a potatoe peeler with some cooking instructions and the rest is up to him. What he is doing is exerting a lot of control over his imediate situation unfortunatly it sounds like you have become part of this and you have to extract yourself from the scenario otherwise there will be no distinction between immature and adult behaviour. When you become focused on behaviour and not solutions you are handing him control. He will think if you try to do something I don't like all I have to do is up the game with really extreme behaviour and you will back down, he can't loose. I think you need to be in the position of smash the place up if you want mate but we will still be here and we are not budging on our position because we are right!

 

I think you need to be really firm and assertive otherwise you will never be able to introduce adult thinking into the scenario. Eventually he will come around to the realisation that his way simply does not work but this may take some time, as long as you partially support him in his current behaviour pattern, and thats what it is a pattern, you are simply prolonging this realisation from happening. I am sure if you asked him all he wants is to be in an adult/child relationship but unless you behave as an adult this is not on offer from you.

 

If you find confronting him difficult I would be tempted to put this into a letter which I would start by saying that you love him very much but that the current situation is unaceptable and he has to take some responsibility for himself and as an adult you will be there to help him through his current issues when he is ready to do so. I would also be very frank as to how this has made you feel but that you have to get on with your own life and that you are not prepared have him emotionally hijack it any more. I would also set a deadline on making real progress a suitable time being a week and that you will make the call on what you feel is significant progress. This gives him time to sulk and draw his own conclusions if you mean it or not, of course your behaviour in the meantime will show you do, and give him the time to make the move, but wouldn't say what you consider to be satisfactory progress let him sweat on that one. If he rips it up write another one then another one, whatever it takes.

 

If at the end of the week having tried this or a similar approach and nothing has change seek external help as I think you have demonstrated good parenting skills. I know this sounds tough Jan and believe me it is, I also know its a bit easier as a 6ft tall male, but you can not be frightened by him.

 

My experiences of fostering very difficult individuals is that they want to be in a relationship which feels right. Very often they act in the most immature types of ways as a cry for help saying look at me I am really a child here and I am struggling. What we need to do in response is yes I know I understand, I love you very much and I am going to show you I am adult enough to be able to take the burdens off your shoulders and carry the weight for you because you are not strong enough yet and I am. My experience is that once they get this message they feel able to let things go and it will all come out in a massive emotional flood which offers them release. You can then start to work through things together. Without an outlet this energy build up has to go somewhere and often it is through anger as it is the easiest emotion to deal with in these closed in scenarios.

 

You have to try things rather than maintain the status quo. You will only have so much energy Jan and what you have you need to try and make it count otherwise its a long slow route to burnout which is in no ones interest.

 

These are just a few thoughts no one said parenting is easy and we often feel like we are failing but we can only give it our best shot. If there are two of you around which it sounds like, you must, must, be singing off the same sheet and put on a united front and be in this together.

 

Good luck.

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Jan,

 

My 16yr old son was diagnosed with Aspergers at the age of 14. Things started to go wrong when he started High School (aged 11). He became school phobic with social anxiety. He became more and more reclusive, spending hours and hours on his computer and on his own. His sleep pattern got worse and worse. Usually he has a reversed sleep pattern which of course is an avoidance tactic.

 

I just wanted you to know that you are not alone. There are many people with ASD who have this tendancy. Over the years I have tried everything to get my son to comply. Removing his computer or trying to regulate the time he spends on it. Trying to get him to bed at a reasonable time and then up at a reasonable time. Not cooking for him or providing him with sweets which resulted in him not eating or drinking for days. Our ASD kids can develop eating disorders and are usually fadish eaters anyway. I have withdrawn myself and still use this as a coping strat for myself when I feel down in the dumps. Nothing has really worked. Eventually, I had to accept that only my son could take charge. I can rant and rave, cry and do all the emotional things but really, in my experience, these make the situation worse.

 

It is very hard for people who have not had to face this challenging behaviour to quite understand (even if they have ASD themselves). Believe me I have been told to take charge as the parent so many times but until you are faced with a person who is totally set on excluding themselves from society, not just for one day but as a life choice, I think it must be hard for most people to comprehend.

 

Just hang on in there!!! You can only do what you can do. Never doubt yourself as a good Mum. Keep looking forward as things could change. Always stay positive. I am sure that something soon with inspire your wonderful child to look for change himself.

 

B

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I seriously hope this post does not become a battle of ideas. As I understand it Jan came on and asked for help and ideas with how to try and get a large 14 year old to do something.

 

I have had experience of over half a dozen children with very challenging backgrounds ranging from very severe physical and emotional neglect, through to sexual abuse, and psychological issues including having been a 10 year old who had to find an adult dead in their own home through a heroin overdose. What I learn't through my experiences with these and other children was that every single individual is very different and whilst we have ideas as to parenting strategies which have worked for us in the past we have to be flexible and look at the child in front of us and what thier needs are at any one particular time.

 

The more we spend time with a child the greater our understanding of them. I would never dream of believing I had the answers for a child I had no detailed experience of. Because of this it is fair to say I along with others might not quite understand what it is like to be someone elses shoes. What I do think is important though is that we do not transpose our own belief systems developed around our own children onto another child who might be a son or daughter of a forum member. Rather the forum is a place to exchange ideas and experience and we leave it for people to draw their own conclusions as they relate to the scenarios they find themselves in. Terms such as 'believe me' by their very nature imply don't believe someone else and are not signs of ideas freely given to be either tried or rejected as inapropriate which are both equally valid responses.

 

I realise that people in my position are not able to join an exclusive club for mums of teenagers with ASD I am the wrong sex for a start and my own son is not old enough yet. I have noticed in my first week that people have not come on and asked questions with the prefix can any mums of teenagers with ASD please advise me ......... if thats what they want thats what they should say.

 

The people who could make a really valuable contribution would be individuals in their late teens who have had to go through this themselves and to share their experiences and what it felt like for them and how they moved on. We all have to be very carefull that we do not make the forum boards a place where these individuals do not feel comfortable in coming forwards and making a contribution, just food for thought.

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reading this it is what is happening with my son hes 12 ....has the school phobia cant handle mainstream has tutor they go to nurture unit for 2 hours at the momenet but he doesnt want to be there....peopel dont realise how ahrd it really is except the ones who are going through it i i have ms and cant allow myself to get too stressed .....my older 3 children have traits and my eldest son has an IT company and a 2 year old boy and beautiful partner...my daughter has 2 children and my other son is doing apprenticeship ......i take every day as it comes and know th ngs willl change ........

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If you can tell me how to make a large 14 year old boy do anything that he does not want to i would be delighted to try! He flatly refuses to do anything, other than come downstairs for food. His response to any request, or demand, or suggestion is instant anger. If pushed he becomes violent.

When we try to take his laptop away he goes berserk, destroying the house in rages that last for hours. We have been advised not to remove his laptop as it is his attachment object. Quite frankly I am at the point of giving up. I don't think I can be the right person to care for him If others think it is so simple to sort him out, because it is quite beyond me. I know that you don't mean to critisize and thank you for trying to help, but frankly I am teetering on the edge of despair so I am feeling a bit sensitive.

 

Been there, seen it, done it, got the T-shirt.

 

I had a pretty much similar experience with my son (though probably not for the same reasons). I believe my son has PDA too. PDA is on the autistic spectrum and there is info on the National Autistic Society website about it.

 

It does sound like he could well be depressed, as my son was (and possibly still is). It is understandable that they might feel down if they are unable to do things other children do, or that they themselves used to do. We have given our son time to heal. School nearly destroyed him. He hasn't been for 3 1/2 years, we ended up deregistering him to try and take the pressure off him, which it did in his case.

 

Does he have particular interests? You have to try and build on their interests and try and get them to go to somewhere with some connection with their interest (eg dinosaur museum, science museum, planetarium etc). Will he go down town to buy a computer game? I'm not saying that because I think he will, but he might after considerable encouragement. We found the best way was to 'drip' things to him, plant seeds in his mind that can then grow over time.

 

Telling or trying to force has never ever worked for our son. Threatening to take things away doesn't work either, as he'd rather give you those things than do or stop doing whatever you're focussing on. Our son did get genuinely suicidal and the computer was his only 'protective factor', so it's very difficult for us to contemplate taking that away.

 

It is NOT simple to solve. Some people do not realise how low children can get, or how they will fight for their life to protect themselves from things that make them anxious or fearful. Please do not be hard on yourself.

 

It used to be impossible to be strict with our son, but now the depression and anxiety have lifted to some extent we can be much firmer with him and he is much more reasonable, most of the time.

 

Keep trying to get help. Is there an old friend of his who might visit? Even if they just pop their head in his doorway and say hello and then go. If he can cope with that this could be built on over time.

 

Try and take some time out for yourself if at all possible. It can be exhausting living with this situation. Any break will help you have the strength to deal with it.

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Welcome i was diagnosed asperger aged 16 but still question whether it is classic autism.

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Hi

I have just returned to the forum having taken a break to think over some of the advice I have been given. I would like to thank everyone who has take the time to respond to my posts. I find it so reassuring to know that my son is not the only one who behaves in this way, and that other parents also find it so difficult to break through the barriers he puts up. It sounds so easy - 'take his computer away' - but it just doesn't work (unless we want our family home to be a battlefield, which for the sake of our daughter we don't). I feel rather pathetic saying that - I have always believed that as the parent I should be in control. Hearing that some of you have felt the same way helps me to cope with my negative feelings about my parenting skills. My son does not think like a NT person and I therefore have to approach his rehabilitation in a different way. I know that most of you understand this and appreciate your support. We will get past this, it will just take a long time - tiny steps all the way!

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Happy to advise sorry i couldnt help you resolve the situation. A few books include 'people with autism behaving badly', 'behavioural concerns and ASD' and 'asperger syndrome practical strategies for tantrum rage and meltdown', i did a module on 'challenging behaviour' last year at uni, good luck.

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