Bren T

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 I have withdrawn myself and still use this as a coping strat for myself when I feel down in the dumps.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

Just a note - I got an initial SEN without a school placement when J was first dianosed with School Phobia and Social Phobia. I got an idependent SALT assessment and this showed that he had Receptive Language Disorder. One of the main reasons that we won the SEN Tribunal and got our school placement was that the Ed Department had failed to provide us with any help for his Speech and Language needs even though they had recognised that he had problems

Hi Kez, I am Mum to a 16yr old boy who was only diagnosed with ASD in October 2010. Our nightmare time started with school refusal when my son was 11yrs and had progressed to High School from a very small Primary School. For four years we were totally unprepared for the changes that we would have to face. His total character and way of life changed. Were were given loads and loads of what would turn out to be very unhelpful advise. He was diagnosed with Social and School phobia and became more and more reclusive in nature. We were pressured to try and force him to comply. During this time he was being seen by Specialists from CAAMHS, an Educational Psychologist etc. Nothing we tried seemed to work. He become depressed and over time, more and more reclusive, only attending an Inclussion Unit of our local High School for a very limited and inconsistant periods. In June of 2010, after being put on Prozac for his depression which was getting worse, my lovely good natured son, attacked another boy who was in the Inclusion Unit. To keep a long story short, this culminated in a Medical Exclusion from school and because this behaviour was so out of character, nobody could understand why he had done this and would not give him a risk assessment. This left us with a reclusive child who was only being offered a very limited home tuition. In August 2010, he was admitted voluntarily into a Mental Health Unit some 50miles away from home. A very hard time for us. By this time we knew that Social and School Phobia could not be the whole picture. We had been crying out for help. Anyway, this proved to be an amazing decision. At the Unit my son was diagnosed within days as having ASD (Aspergers, High Functioning Autism). THE LIGHT WENT ON........... At last we started to get the help and understanding we needed. He stayed as an inpatient for 8 months. During this time we (and the Specialists at the Unit) requested that J get a smooth transition from the Unit to a residential special school (which was not in our area). Js main problem is that he has a reverse sleep pattern which I understand is quite the norm for his reclusiveness. At home, he always reverts back to nocturnal tendancies. Anyway, of course the LED dragged their feet (we also had an awful LED Caseworker) and after offering us some completely unsuitable placements, we went all the way to Ed Tribunal in September 2011. We won absolutely with extensive Speech and Language and Occupational therapy assistance. We gained a placement at the school we had requested initially and the one that the Mental Health Unit had recommended that he go to! So, another whole year had passed, my darling was now 16yrs. I cannot believe that 5years have passed since he started to be a school refuser. I suppose what I wanted you to know is that all of our kids are different. My son does have huge problems with social interaction. He is very bright but without life skills he wont be able to ever lead an independent life and will become more and more reclusive. Because of this, I now am only focusing on the life skills and hopefully the education will come later. Due to his sleep pattern and anxiety, we have not managed as yet to take up the residential placement at the school but we take him on the 100mile journey to school twice a week (sleep and anxiety permitting). He is gaining more of his confidence due to the intensive SALT and OT sessions. He wont travel by himself, so I take him one day and his Dad takes him the other. We are both Self Employed so we give up one day a week each. Local High School option was so very unsuitable for us. It caused so much damage because of lack of understanding and because of this we are having to do this ridiculous journey too and from school to engage our son back into life. Only the peope on this forum will understand fully why I have to do this!! To give up is giving up on my son having an independent life!! Good luck to you Kez X LancsLad and Sally 44 - Always look forward to getting your advise. I am not a great one for actually posting advise but I always read the advice that you give.

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Hi Tom, Welcome. I am a Mom of a reclusive AS teenager. I have only recently joined this group but it has helped me to find many other people going through similar situations and facing similar problems. I hope you will also find it as comforting and as friendly as I do. Kind Regards, Bren

Hi, My son gets a small amount of DLA. We only received it for a few months before him reaching 16 as he was only diagnosed with AS five months before his birthday. My son is reclusive and I seriously considered being appointed as his Trustee as I feared, like you, that he would flitter the money away on 'stuff'. I decided that I would leave him to control the money and that if he decided to spend it on what I considered to be rubbish then hopefully I could explain the benefits of saving for something important when he ran out of funds. So far, (5 months or so), he has managed quite well. He does buy computer games quite a lot but as this is how he fills his reclusive time then I guess this is important for him. He did surprise me by buying a Jumper for himself!! Christmas is coming, and I will be explaining that he will be expected to buy his own gifts for the family. We will see how this goes. Also, I did encourage him to attend the Bank with me initially to open a bank account for the money to go in to. As he is severely reclusive this was a challenge but he managed to attend an appo. As he has lost the code for the interneet banking, I also encourage him to come out once a month to check the balance. My way of thinking is that we wont always be here to influence their spending so better they make some mistakes and learn by them now.

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