Jan63

Welcome to the forum.

Welcome Luna. x

Hi Blue Of course you have not failed your daughter, you are just having to come to terms with a diagnosis, and that takes time. Try to think of it as a signpost to obtain the support and advice that will help you to help Abi. My son was diagnosed 5 years ago and I have learnt to understand and deal with his behaviour so much better over that time. He is now 14. This forum is an invaluable source of advice and comradeship. It is most helpful because it is a mixture of parents of and people with ASD, so you get both points of view. I hope you find what you are looking for here. x

Hi Karen. I am in a similar position with my 14 year old son who has been refusing school for 4 months now. He is also socially phobic and cannot bear the thought of anyone seeing him, so he will not leave the house. So far his school has been understanding, thank goodness. It is heartbreaking to see my lovely boy so withdrawn from the world, but over the years I have had to come to terms with the fact that his life will not be what I would have wanted for him. Our pyschiactric consultant seems to think his behaviour is within the realms of 'normal' for Aspergers and that time is needed for him to gradually rejoin the world. I hope she is right. I do know that from reading this forum and other research this is quite a common problem for teenagers with Aspergers. I have also been reminded that education is accessible at any age - I myself am doing a degree course in my forties!

I can understand how your are feeling Sarni. My 14 year old son has been out of school for 4 months now and shows not inclination to return. We were in a similar position to you 5 years ago and I hope that you will be able to avoid complete school refusal. I wish I could tell you how, but I'm still trying to work out what went wrong with my son. The build up to complete school refusal seems to be a gradual process and I think that the school attendance officer getting involved and putting pressure on him (by threatening court for us) may have contributed to his present crisis. We are not currently involved with the attendance officer, but every time she is involved in meetings my stress levels soar. Why can't they understand that having an autistic child is stressful enough, without the added worry of fines and court appearances? I hope they will understand the reasons behind your sons poor attendance and give you the support that you need. Best wishes. x

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!

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.

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!!

Welcome to the forum Alia. I am sure you will get lots of support and good advice, just as I have.

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.

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!

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??!!

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.

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.

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

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