Feather

need some advice please. Son is nearly 18 ASD, and he has tried 2 college courses up to now, that have not worked out. He can't cope, and can't cope with the other students. He was diagnosed late, at 15, and we have not had much help and support as a family. He is becoming more violent and agressive towards us all as a family. I get most of it, as I am at home all day with him. He is 6ft, and much taller than me. I never used to be scared of him, but I am now. He hasn't actually touched us, he has spat on the carpet and throws things around, and punches the doors. I feel pathetic having to ask for advice, but what am I supposed to do with him? I have contacted social services several times, but they are not interested until he is 18, which he is in a few months. We are so desperate, that we have even talked about him having to go and live in residential care somewhere when he is 18, so we can have some respite. He doesn't sleep much, and goes off out of the house late at night, and leaves it unlocked all night, even though he is back and in bed. We have hidden the keys, and he climbed out of a window instead and broke it. Please if anyone has been through this, how did you cope, and does it get better?

Hi Kathryn, thanks for you reply. I have told the SEN office that he struggles to wait around for an hour, and they still gave me the same answer. Any information that you have will be very useful for appealing. I will start off with what you have said, and see what happens. They don't seem to read back through the information of why they were given a taxi in the first place, which was when he was at secondary school. His ASD is not going to get better overnight, or go away. I can't believe the other post, where the son has to travel for so long just to go to college. Feather xx

Hi everyone, not posted for a while. Just need some advice. My autistic son is 17 and at college, and has a taxi provided for him by the SEN department, and he also had one when he was at school. I have been told that for two evenings when my son finishes college at 4 o'clock, he will have to wait around for an hour for another student, that doesn't finish till 5. I have asked why he isn't having his own taxi, and they say it is to do with funding. Their argument is that college should provide him with somewhere to go for the hour. The college do not do this, and they wouldn't ask a school to do it would they? He is not doing an academic course, it is a pratical hands on one specifically for people with learning dificulties. He needs to come home as soon as college finishes. The college is out in the countryside, and my son is more than capable of trying to walk home if he has had a bad day!! They have also said that he could be doing work on the computer while he waits, but I have already explained to them there is no written work for him to do. Has anyone else had this happen, and know how to appeal to the SEN department? As someone quite rightly pointed out, if he is given a taxi contract with his name on it, why are they trying to make him travel with somone else?

Just posting an update. We have had our visit this week from someone at the DLA, and they do exactly as emmasmum has said. They checked if it was ok with my son for me to manage his money, and checked my ID. I then signed a form to say I would be managing his money. The person was really nice and just asked a few other questions to see what his difficulties were, and about college etc. The forms do change when they turn 16, as they are maybe going into further education etc. I don't know if they visit all homes, or wether you get picked out randomly.

I agree with what Kathyrn has written. My son is in exactly the same situation, with a reduced timetable, etc. His school don't even liase with the college. I spoke to the learning support dept at the college, who put me in touch with the person that gives support for ASD students. Myself and my son went to meet him, and they were really nice, and said they still take into account everything listed on the statement, and discussed the support he will need. We have also spoken to the tutor for the course, about the help my son will need. Thay also showed him around the college, and the dept he will be going into. The way the college put it was that they would rather know about his ASD and the support he needs now, than he has serious problems on the course, and they might not know why. My son is still quite reluctant about the support, but he is more open to it after these meetings. It has also been explained to him that support is in the classes anyway, for other students who might need to access it. I feel quite positive about it all and so does my son, and we are hoping it is a fresh start, and an exciting new career for him.

Thanks everyone for your replies. Have had a letter to say name of person from DWP who is coming to the house, and that it is to speak to me and my child, to check they are ok with me managing their DLA money. I have to show 2 proofs of identity and they are also coming to see if they can help or offer with any other services.

Has anyone signed the DLA form that is sent out after DLA has been awarded for 16 year olds, that says you are going to manage your child's money for them. Once you tick the box to say you are going to do this, it also says they will send someone out to visit you in your home. Has anyone done this yet, as I don't know what to expect, and someone from DWP is coming round next week.

Thanks all for your help and advice, he hasn't mentioned for a few days, so hopefully he might have gone off the idea now. He might think about a car instead when he is a bit older. xx

Hi Carol, we have had a similar situtation with our son. He is nearly 16 now, and diagnosed last year. We had the same at primary school, not recognising anything. You can put in a request for statementing yourselves as parents. We did this and got one straight away. School had done it too, but we didn't trust them, so put in our own request. We got a brilliant report from the ED PSYCH, and as a result of that, he got his statement within 3 months. He was 14 when he got his statement. We then got his diagnosis nearly a year after that. We didn't want him to go through his GCSE years with no support. How does she feel about her diagnosis? My son was very down and depressed, and had alot of meltdowns. He has come to terms with it all now, and has nearly accepted it. He is going to college in September. If you contact the National Autistic Society and speak to them, they will give you numbers for SEN solicitors in your area, and you can get 30 mins free phone advice. Your daughter can get legal aid, as we have also sought advice for the same thing. It is best to speak to the solicitor though, and they can point you in the right direction. Hope this helps, and we know what you are going through.

My ASD son will be 16 soon, and wants a moped like his other friends. We want him to be as independant as possible, and he is going to college in September. We are worried that he is not mature enough or responsible at the moment, and would rather he waited until he is old enough to drive, and have a car. Has anyone else had experience of this and could give some advice?

Hi, we have had the same problems with our son and some of the TA's. I took it up with the SENCO, as she was the one asking the TA'S to write things about him in a diary. He was always the one being targeted, and the others not being told. You just have to make it clear that you are not happy with just your son being singled out, when the other pupils are also doing things. The way we put it was, that they are supposed to be helping him with his ASD needs, not reporting negative behaviur all the time. If the TA and class teacher were doing this, your son like ours, would not be having these problems. It took us a few times of saying all this, but we were eventually listened to. You should also point out about concentration, etc, is the reason he has a statement in the first place! Hope this helps.

We had similar problems with my family, as my husbands parents have passed away quite some time ago. Looking back, his Mum was the one that showed signs of ASD, and was very hard to get on with. My own big family took ages to believe our son had ASD, and it kept being implied that we were putting a label on him. Most of them are very supportive now, and have changed what they think about it all. My husband has always been very supportive and now recognises that he has traits of ASD as well. The best thing for me was when he went to one of the NAS help seminars about ASD. He really enjoyed it and can finally understand our sons ASD, and traits of his own. I would suggest that you could try and get a family member to go with you to a seminar that doesn't quite believe about ASD. I am taking my daughter to one in June, as she is quite bad towards her brother at the moment, and she is 20! We also think she has it as well, so think the seminar will be helpful for herself as well. Please don't think you have to do it all alone, hopefully in time family members will understand. We just challenge anyone now that has anything unhelpful to say about our son's ASD.

Glad that things have been sorted out for you and your son. You don't say how old he is, but we have been through this with our son. He got into trouble twice through no fault of his own, and had to go to the police station and have fingerprints, etc done. There were no charges, as the solicitor both times was really good. He is 15 now and it was a few years ago, and he was going through diagnosis. We also didin't find out about the ASD police trained near our area, until a while after, no-one told us. Thats how I know exactly how you are all feeling. My son got diagnosed, and he didn't go out for quite some time, as it really affected him, and we were terrified to let him out. He now has a couple of really good friends, that he goes out with if he feels up to it, and they know how to handle him and to ring us straight away if anythimg happens. You will get throgh this, and in time your son will be able to get out and about again, once he is diagnosed, and comes to terms with it all. My son has also matured just a little bit more, and is becoming more aware of prolems that can happen. It is other people that have the problems most of the time, and they don't understand ASD. Things do get better, so just remember that. Hope this helps.

Hi, just read your post, and wanted to ask about the part where it says parents signiature is required. We have had 2 annual reviews now, and never been asked to sign anything before or after the meeting. The only thing we signed was the reply slip saying we were coming to the review. Does anyone know who you complain to if you are not happy with the review summary report the school sends out after. Half the things discussed at the review were either not mentioned, or glossed over.

sorry to hear about what has happened. Have you got any police officers in your area that are trained in ASD? I was at an autism conference last year, and they were starting to train officers and make them aware of coming across people with ASD. When I was at a local autism group meeting as well, we had a police officer, and a community support officer that were trained to deal with ASD people involved in incidents. They were very understanding, and gave us their cards and said we could ring or email them anytime, and they would help us. Even if your son is not diagnosed, he is going through the process, and should be offered this support. They will be able to see it from both points of view, and hopefully help you. If you don't ask about it, you will not be aware if they have these ASD officers or not. I hope they do have for you and your son. We have peace of mind now knowing that we have these contact details for our son if he is ever in trouble. Hope everything gets sorted soon. Believe me we have been there with our son at times, and I know how you and your son are feeling right now.

Thanks all for making me feel a bit better. We are so busy looking after our ASD children and the rest of the family, fighting the school system, professionals, etc, that we don't have time to look after ourselves. This was why it was such a shock to be not well. I do take thyroxine, and improve every day. You just tune in and know your limits. It makes me feel better that there are other Mums like me, and husbands too that are not well. I just don't see why we have to continuosly use up our energy fighting for things for our ASD children. My child is leaving school shortly, and we can't wait.

Is there anyone else on here looking after an ASD child, and they are not well themselves. I am Mum to an ASD teenager, and was diagnosed with an under active thyroid last year, and have to take medication for it. Just wondered if there are any other Mums with the same condition and how do they cope? I had to give up work, as I couldn't cope with sorting out statementing, diagnosis, fighting school for everything, etc. I have never given up fighting for him, and my husband is very supportive. It has just been the last thing I needed, not having alot of energy some days.

We have actually done all this, and our MP has been involved as well. We have still met a blank wall with the Head. He even tried to stop things going ahead at his review in January, but we stood our ground. The issue is about him threatening me in several phone calls, which he knows there are no witnesses. We were also told to take it to the Governors and that he wasn't bothered. He thinks he can hide behind his Governors, and he is untouchable. We complained to the Governors about the Head, and they have let the Head deal with it, so what is the point of that? We have followed the correct complaints procedure and are now at the point of needing legal help, which is why the Ombudsman have told us we have a case now. It is about the schools lack of help and support for our ASD son, and the way they have treated him before his statement, abd diagnosis, and after it. They have also treated us badly, when we have tried to ask for help and to complain. Our son leaves shortly, and the Head, SENCO, and some staff are not getting away with what they have done. I read things on here every day about parents just starting out for a diagnosis, statement, etc, and it really upsets me that we are all treated this way. All we want is the best for our children, to help them go forward into adult life. These people should be held accountable for what they do, and the way they treat people, and should be made aware of the consequences for these children. We have come this far through the education system with our son, and now we want some answers. Will keep you posted as to how we go on.

Thanks for replies. My son is in his last year at school and leaves soon. He has a statement for ASD. He only got this in November 2008, as he is very late being diagnosed. The problems are his needs not being met properly as listed on his statement. The Head has threatened us every time we have complained. We have had our MP involved, and have followed all the correct complaints proceedures, to the Council, Special needs office, Governors etc. The Head thinks he is untouchable and can hide behind his Governors. By the way is it only the Head of Governors supposed to deal with parent complaints, or should it be dealt with by all Governors at a meeting. We need all this adressed before our son leaves the school. Again the Head thinks he is leaving and that will be everything over with. From our point of view it wont be, and we need him and the SENCO to be held responsible for their neglect and treatment of us and our son. I have spoken to the local goverment ombudsman office and they say we have a case. I was just wondering if anyone else had taken this course of action, and what the outcome was.

Has anyone had any experience of taking their complaint about their statemented child's SEN education to the Local Goverment Ombudsman. I have been given advice about it, and we are at a point of either taking it to the Ombudsman, or seeking legal advice from an SEN solicitor. We have been very unhappy with the treatment of our ASD son in school, and ourselves when we have written complaint letters to the Head. We fell that we have reached a point where it needs to be looked at from a legal point of view. It is very sad that it has got to this point, but we feel the Head has tried to threaten us into not complaining any further, and hidden behind the Governors, and kept the complaints in the confines of school. We don't even think he has followed the correct proceedures when we have taken it as far as the Governors. He shouldn't be allowed to treat us and our son in this way, and he will carry on doing it to other SEN children and their parents if he is not stopped now. If someone can advise, I would relly appreciate it. Thanks

Does anyone have an adolescent ASD son/daughter who will not wash very often? My 15 year old son has major problems with smells. He is so sensitive that he can't stand the smells of everyone elses perfume, deodorants, etc. He will practically have a panic attack if he smells anything. He has got worse as he has got older. We all have to spray products on outside the house, and after a bath/shower, leave the window open. He has even commented about the washing powder smell now. Can anyone recommend any products he himself can use for deod, washing etc. How do they deal with this problem? He seems to be worse when he is really stressed, and his hearing is very sensitive as well. Poll xxx

My son is currently in a specialist unit for ill and sick children. It is run by educational medical services, and he has been there for this past 8 week term. He has had to go there as he is suffering from severe stress, caused by school not understanding his ASD, or meeting his needs correctly. Sound familiar?!! We are not getting on with the head or SENCO at all, at the moment. We don't want him to go back into school, as he will be picked on even more. The centre is ok, but they only do 2 lessons a day, and he will start to get behind. Has anyone gone down the route of asking for a home tutor to be provided by the education authority? I could home educate, but am suffering from ill health myself, and also he is in his last year, and taking GCSE's. He is on target to do well in his exams, and he wants to work hard towards them and get good results. I have posted another message on her under having problems with Head, that explains things in more detail. I hope someone can help. Poll

Has anyone else had experience of a headteacher being aggressive down the phone, and threatening them as a parent with Governors, etc. My son's head has now threatened my son's consultant for ASD with the county council solicitors if he sends a report that isn't to the heads satisfaction. The report is a true summary of what happened at a joint session with the consultant, myself, the SENCO and SSA from school. Basically school are not understanding his ASD needs, and not meeting them properly. Why would the head be so annoyed at the truth being written? Is it because maybe they are not doing their jobs properyl? I really do feel threatened by this head, but I will not back off. If this is how he treats me, it is obviously what he is doing to my son, and allowing the SENCO, and other staff to do the same. Has anyone else tried the route of seeing a solicitor that deals with SEN cases and disability discrimination, and did it help?

Hi thanks for your reply. Did you know that when you write to the governors you need to find out who the SEN governor is, and address it to them We had a school meeting that the SEN governor attended, and the Head was not happy. I have some good news for everyone, my son's specialist invited the SENCO to attend his next appointment, which was yesterday. He told her that they were not addressing my son's ASD needs, and making the classic mistake oft treating him as a child with behavioural problems, instead of addressing his ASD needs. He is sending a letter to the Head about what they need to be doing and then we have got the next review in January. I am hoping they will take it all on board, but I wont hold my breath!! At least they can't keep blaming my son anymore for their incompetence. Will keep you updated. From Poll

Hi there, thanks for your reply. What is the specialist SEN outreach programme? I haven't heard of it before. I do have a parent partnership person for support and she is very good. The centre he is in at the moment have told school that he is doing really well there and working hard, and don't understand why school are having problems with him. The problem is the SENCO not doing her job properly! All the things like the IEP etc look good on paper but school are not carrying things out properly and are dragging their feet over things that should be in place. We are going back to see the specialist in a few weeks for some advice and I have asked for the review to be held after this, and it will be in January now. Poll xx