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Jan63

Won't accept help

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My son is 14 and was diagnosed with Aspergers when he was 9. He has never wanted to accept the diagnosis and refuses to discuss with us or anyone else. If he thinks I am researching AS he gets very angry and he hates us talking to anyone about him.

 

Things were going OK, he has always been challenging (I'm sure you know what I mean without details!) but he was managing to go to school fairly regularly. When there he gave the impression that he was coping well, until about 5 months ago. Every morning was a battle, with me trying to persuade him to get into the car and him getting more and more aggressive. Some days he won, some days I did. When his attendance fell below 80% School brought in the attendance office and they tried to put pressure on him, with the inevitable result that he stopped going altogether. His life now consists of him lying in his bed, looking at his laptop. (Sorry, this is a very potted history of the story).

 

The frustrating thing is, we have a queue of people who want to help him, but he flatly refuses to engage with any of them. We have the school SENCO, a family support worker, GP, Consultant Psychiatrist (CAMHS) and psychiatric nurse, all of whom come into our home to try and help him (he feels he cannot leave the house now) but he doesn't think he has a problem. He thinks everything in his life is OK and we should all just leave him alone! He has always feared appearing to be different more than anything else. He also believes that everyone stares at him (including us).

 

Has anyone else experienced this refusal to accept help? Or even managed to overcome it?? Any advice would be gratefully received.

 

Jan

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Sounds like angry depression which ive experienced from time to time. The only long term solution that i found was going gluten and dairy free but then he might stop eating altogether if you try and take away his favourite foods.

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Thank you for your reply trekster, I really value your take on things. We have not yet tried diet modification, considered it in the past but his diet is very restricted at the moment. Angry depression sounds like an accurate description and I am pleased to hear that in your case (and hopefully his) it passed. Our consultant would like to prescribe meds but as DS does not think he has a problem it is very unlikely that he would agree to take them.

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Jan63 YVW happy to help in any way i can.

 

Selective eating is also common in autism, it's connected in part to sensory issues and also can be connected to food addiction.

 

Would leaving positive autism literature around the house where he might look at it help? i know of a selective silent Asperger who on one of my short breaks read some of the autism books even though he doesnt consider himself disabled.

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Will try to offer some advice from the position of someone with Asperger's and having spent a lot of time in school environments as a teacher. I have also been a foster carer with challenging individuals who have been school non attenders between the ages of 11 to 18 as a bit of background. I do not have a child with AS so please bear that in mind Jan.

 

Your son is currently getting things very much his own way. If the stresses of going to school create that much anxiety that he simply feels he can't cope then I can see why he would take this stance as a simplistic fight or flight response. Unfortunatly the more he carries on like this the more the behavioural pattern develops and the harder it is for him to break the cycle. There are a lot of NT young people who develop this type of response for a number of reasons.

 

I think the answer lies in the mid term in him understanding that not going to school for the next two years and the problems that entails is not a good long term option for anyone of his age. You said he was seemingly doing well, but I suspect either something has gone very wrong in one or two areas or the accumilation of stress over a period of time has become too much have you discussed which it is? In my school life the same things happened to me to the point I was in and out of school but all behind my parents backs and there was no support available. The truth is my school couldn't care less and it only came to light at the end of the year when they were honest with a school report and comments came out such as 'I don't know who he is', quite funny looking back.

 

I eventually made the decision to take myself back into some lessons sneaking back into school as I enjoyed them and knew they were things that I was good at and that I had realised that things such as sneaking off to go fishing all day were not going to help me as an adult. Though at the time I did not know I had AS, nor would I for many years, I did know I was very good at some things and very bad at others, what I did not need because life was hard enough for me already coping with lots of other issues attatched to AS was school focusing on my weaknesses and labeling me as a problem. By not going I was not in a position to be labeled.

 

My initial reaction is focus on getting your son to do things related to his education that he is good at even if this is at home, this is a reasonable compromise and as such I believe you are entitled to take a firm hand you are his parent and if this means confiscating computers etc so be it! I would let him have some say in what he does in respect to work but it must be the best he can do and put value on it creating a positive experience. The problems with schools is they are preoccupied in trying to get pupils to do what they want to do and far less interested in kids simply expressing their talents. Whilst most young people in school are complient I found this to be a very difficult proposition. I would ask the question are all the support services which are lined up ready there to help your son or are they there to help the school and yourself? The answer in reality is that he has to learn how to help himself as that is the route to independant adult life. That means he has to start to take some responsibility for his actions.

 

My advice would be to ask your son to outline how he is going to solve the current scenario giving him the opportunity to take some responsibility. If he can't come close to outlining a plan then this is the time for tough parental love and point out that he had the first chance and now it will be up to you to sort out an integration programme back into school. If he manages to outline a half reasonable plan then I would suggest you strongly take his side and support this position and try and push this through with the school. I would say it is unwise to ask a young person for a mature response and then undermine them when it does not suit a school, it is the schools responsibility to act in his interests.

 

In the wider context I think it would be very hard for anyone to accept they have AS if their environments are on the whole working against them and as a result they are disadvantaged and judged against others in a negative light. When I recieved my own diagnosis aged 44 I found it relativly easy to accept as I could look back and see that a lot of things AS gave me meant that I was well above average in respect to my skills profile and as a result had achieved a lot in my adult life. My childhood was on the whole a very misserable experience and school could have been a total disaster. I was fortunate that I understood my own potential just in time took responsibility for my actions and mainly self taught I acumilated a reasonable set of examination results which allowed me to selectivly continue in education in very much my own way being the first person from my school ever to go to university very much to the amazement of the teachers who had very mixed views about me as a non conformist. For interest this success even included getting a grade C in the subject I has not attended a lesson in over two years in which the teacher correctly reported he hadn't even seen me in that time.

 

At this time I would not make the focus AS or any services lined up in this way rather that though 14 is a difficult time for anyone it is the time where we start to mature into being a young adult, take responsibility, and grow as an individual. Expalin to your son that the last two compulsory years at school (taking a guess he is in year 9) should allow for more flexibility in the types of subjects and that by proactively engaging with school he should be better able to tailor his choices more towards his prefared learning styles and environments where he may be more comfortable. In the short term it is not wise or mature to blow these opportunities over the next month or so. If this is the case I know of a lot of kids at this point in their school career who want to give up on things they no longer see a relevent. Maybe some of these things do need to take a back seat for the common good.

 

Hope some of this might help, I have had along with my partner had real battles with individuals in my care in the past in trying to get them do do some positive things simply so I could start to build them up and develop their self esteem. Often the battles have been with the schools who at times want to focus so much on what they have done wrong. This is not easy Jan and you have my support and thoughts but respect between you and your son is important and him being allowed to lie on a bed with a laptop or trying to get him into a car does not sound right to me. Your son has a choice as to whether or not to accept a diagnsis for AS or not. What he has to accept is that he is 14 and that is not negotiable and as such I would make his age the focus and not AS though I am well aware it greatly affects how he sees the world.

 

Best of Luck, no one said being a parent is easy but it is the most rewarding thing we ever do.

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Thanks for your long reply LancsLad! My husband and I (I sound like the Queen!!) are thinking over your advice. I am looking for an opening to ask DS what he feels about his future. If I don't choose the right time I will only get ignored or worse. I feel his school have been very supportive so far. I am convinced that they try to act in his best interests. I suspect that he is currently depressed and it could be that we will just have to wait for him to recover. Meanwhile we will continue to try to engage him in family life as much as possible.

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Hello

 

I am new to this forum so please forgive me if I make mistakes. I can totally relate to your post ... my son (age 13) has refused to attend school for 3 months now. He justs sits at home playing on his computer. Lots of people are trying to help him (IDS, CAHMS, School SEN etc) but he will not engage at all. Today, hubby and I went to look around a special school in anticipation of the statement but son refused to come with us.

 

The school was great and seemed to be perfect for our child. Son will not discuss it and we are at a complete loss. He will not leave the house for any reason except swimming at a local private gym that I have joined. Any advice?

 

Kind regards

 

Karen

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Hello Jan

 

I have something similair to your son and I was only diagnosed a month ago after spending 40 years getting through life.

 

I find the carbon based life forms too "freaky deaky" and unpredictable so I don't go out and therefore avoid the problem of one of them tipping me over the edge.

 

I was given meds to help cope with the stupidity of people but I don't think they have got the balance quite right yet.

 

I can't offer you much advice, but would it be possible for your son to have his lessons in a class room on his own?

When I was at school, we had a "naughty room" to which you were sent if you misbehaved. This was usually staffed by a teacher who was on a break.

 

It's not a long term solution, but a step in getting him back to school

 

SidiousUK

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