Cat

Well said Bid We can all only go from our own experiences and they will all differ. I have two sons with autism one diagnosed aged 3 and other was not diagnosed until he was 13 and had a bag and a half full of mental health problems running alongside his Aspergers Syndrome. I have first hand experience of what the difference between and early diagnosis and a later diagnosis can be. That does not mean that this would be the same for everyone. I know for sure that had I pushed my eldest when he had just been diagnosed it would have pushed him over the edge. For him controlling has only ever been an issue when he is riddled with stress and anxiety. Being unsupported in school for so many years took it's toll and some on my son and when he was pushed too hard we ended up on suicide watch with him which is not a very nice place to be. He was not trying to control us he was crying for help. I realise that there is a very fine line between giving in to a child and allowing the space they need to self repair. Even though we lived through some very dark years with my son we did come through the other side. I know that there were several professionals who felt that my son was having tantrums but I went with my gut because I knew that there was more to it than that and in the end I was proved to be right. Knowing that my youngest is autistic from the age of three made a world of difference to us never mind him. We have been able to avoid many of the things that went wrong with our eldest and we have had the time to teach him about himself. Being different is not easy for any one no matter what that difference is. Finding out that you are different at 13 when the rest of your peer group are plunging head-long into life must surely be doubly difficult and that is why we did cut our eldest some slack. It was right for us and for him. My son was never able to return to structured learning but that does not mean that we failed him. It means that we accepted that at that time it was not as important as his mental health. My son did not grow up to be a monster even though I was told that he would if I did not come down on him hard, quite the opposite in fact. He is 22 now and despite the fact that as well as his Aspergers Syndrome he is probably going to need a double cornea transplant or go blind he is a well rounded, none controlling, nice to know guy these days, who is of course still autistic, and despite what other people may believe, and we are all entitled to our beliefs, accepting that his autism could and did impact in certain areas of his life including his behaviour has helped us and him to understand how and why this is and then develop strategies to improve things for all of us. Of course both of my sons are high functioning and so we have been able to do this. Cat

Forgive me if I am wrong here but were there not some definite assumptions of your own regarding the content of someone else’s post? Cat

My son was 13 by the time he got his official diagnosis and by that time we were in the same position as you. All attempts to get our son back into the system failed and resulted in a second breakdown. I agree with JsMum that children with AS can behaving in a controlling manner when they are having issues coping with certain situations, they do tend to crave predictability and continuity, they find change very difficult to handle and swapping teachers is a change. By the time my son had got to this stage in his education he had been so badly damaged by a system that did not know that he had a form of autism (although we had been raising concerns about him from the age of 3 but that is another story) that everything was just too much for him to cope with. Maybe it would have been different had he been offered some hands on support at the point of diagnosis or even before, because we are really supposed to meet the needs of any child diagnosis or not, but he was never offered that support. All of this happened 11 years ago now and I would like to think that a great deal has changed during that time - I would like to think that but I am not so sure that it has. How long before you know if you are going to have a diagnosis? I ask because if you do get a diagnosis then you and hopefully other professional people can meet with the school and discuss what the diagnosis is and what that can mean to your daughter. 13 years without a diagnosis is a long time and in my opinion school will need to understand that fact and need to be patient. Your daughter is also going to need to trust that they are going to do everything that they can to make things better for her and the trust part will not be easy for her especially if she has had a hard time at school. One of our biggest issues was not knowing enough about the condition and we had to learn very fast. We did not realise just how difficult life at school without support had been for our son and how much of a toll that had taken on his mental health. Many of the professionals we dealt with just saw a boy who had behavioural issue and did not look at the reason behind those issues. That said his behaviour at school had always been very good he stored all of his problems up until he could no longer cope with them. It is very difficult to know how far to push our children. Because I accepted without question that my son had to go back to school I pushed very hard and it was not the right thing to do for him. In the end we decided to home educate, which does not mean turning your home into a school or that you are giving into your child, to give our son the time he needed to self repair and to come to terms with himself as well as facilitate his learning. It turned out to be the right decision for us. Had we had people involved who were happy to make adjustments to accommodate our son or whose attitude with him had helped him to feel that he was safe with them things might have been different but for us home ed was the right choice at that time. Cat

Do you mean that you will not be sending your child to school at all because you are going to home educate him? I know that there are some parents who home educate who do not seek a formal diagnosis because they do not believe they would gain anything from it. Looking at the bigger picture if your son is autistic he will grow up to be an autistic adult who might at some point in his life need support or service provision. Without the right diagnosis he might not be able to access support or provision. There is very little on offer to adults at the moment but hopefully that is going to change in the very near future. Even if you are not intending to send your son to school you could still access provision like speech and language and OT. You do not have to get an NHS diagnosis some parents opt for a private diagnosis as well as paying private therapies. If you are not intending to home educate then I would certainly go for the diagnosis because without it your child will not get the kind of support or provision that he requires. Even with the diagnosis it can still be a battle for both. Also if you are being advised to get a diagnosis by health care professionals and refuse and you are planning to send your son to school at some point the health professionals might (and it is a might) question if you are acting in the best interests of your child. Cat

This makes perfect sense to me Sally. It's like the itch scratch cycle and sometimes the only thing to do is to break that cycle or in our case routine. I know that my sons cyclical vomiting syndrome is stress induced for sure and the more something stresses him out the worse it becomes. Once he has had that kind of expereince he expects it to be like that everytime. Sometimes it is worth sticking with it but not at 3am when we are all passed our sell by date and need to sleep. Cat

Yes I too moved into the rooms of both of my autistic sons because of sleep problems. At the end of the day we tried everything with the elder of our two and nothing helped at all. He would not take medication and I would not force him to. As he became older we were able to discuss his anxieties, fears and phobias and he eventually found a way to cope with them himself. He writes all of his issues down and leaves them for me in the bathroom and it works for him. He did reach a point when he asked me to leave his room because the time was right for him and I did and that was that. When we started having similar problems with our youngest (who also suffers from cyclical vomiting syndrome and has been known to vomit in his sleep) I moved into his room - separate beds of course. He overcame his anxieties and fears much quicker than his brother and I often wonder if this was because we did not try to deal with his issues without moving into his room for over two years, which was how long we tried to sort things out with his brother. My youngest asked me to leave his room when he was 10 and again that has been that. Cat

My highly verbal 22 AS son had a doctors appointment today. He has been building up to the appointment and stressing about it now since last Friday. On Monday he went to the loo 12 times!!!!!! He is not constipated but stress and anxiety do this to him all of the time. It is actually very frightening how little those who are supposed to understand our children and adults actually do. Not only that how easily they jump to the wrong conclusion and suddenly what they 'think' becomes fact. Here is a link to something that it might well be worth you passing onto not only the Day Care Centre but also your GP http://autismdiva.blogspot.com/2007/04/str...my-trouble.html it will very probably bling them with science but ignorance is not blissful in my experience. Here is a shot quote from the piece 'So, if the MIND's cortisol and stress in autism study is indicative of what is going on in most autistic kids (and adults), then we ought to expect to see problems like Irritable Bowel Syndrome in autistic kids (and adults).' Change is a BIG issue for autistic people and maybe if they allow your son to settle in his trips to the loo will settle down as he does. Turning it into a BIG issue is only going to create more stress and anxiety and result in more visits to the loo. At the moment I am a member of the External Reference Group and involved in writing the draft Health Chapter for the up and coming Adults Autism Strategy one thing that is coming through via parents, carers and utistic adults is the impact of metabolic and digestive problems and ASD. It has been included into the draft of the Health Chapter which means that even the Government are now taking this issue seriously. Cat

My eldest none autistic son suffers from labyrinthitis which followed on from a serious ear infection. It really affected him for quite a few months. He said he felt dizzy all of the time and as if he was walking on marshmallows. It can be difficult to diagnosis and may be in harder to diagnosis in your son. Here is a link which gives a brief over-view of labyrinthitis http://www.webmd.com/brain/tc/labyrinthitis-topic-overview Cat

100% agree with you here Janey. I try my best not to keep the apron strings attached. I already have one adult son with autism and know how difficult life can be for him. What I do not want is for him to feel in any way smothered by me. My youngest would not allow that to happen and is already flapping his wings aged 12. It's difficult but you have to allow your children the room to grow. Cat

I could see Tom reacting in a similar way that my eldest can react when our house is chaotic and noisy. If our house is too active or noisy my eldest has to escape to his room to block out the hustle and bustle. There are only 4 of us living in our house and he finds it difficult. I could see why Tom might be having issues in such a busy household. I also wondered if his school life had played any part in some of the ways he was behaving. They never really went into that apart from saying that he was in mainstream until he was 14 and then went to a specialist school. Although Tom did say that he had been bullied I think. Cat

There are some things that even we Mothers can not change and getting older is one of those things. I had this with both of my autistic sons. The youngest was actually your sons age when he said that he did not want anymore Birthdays because he did not want to get older. He did not want to get any bigger. He wanted to stop growing. I tried and tried, just as you have to explain things to him to make him feel better but nothing I said made one jot of difference. The issue was change even hidden change like being a year older. You might not look any different on your actual Birthday but your age has changed and you have gone up a number. After trying everything, and I do mean everything, with my son I decided the only way to go was with total honesty. I told him that we could scrap the pressies, a cake, a party and I could even make sure that on the day that no one even mentioned his Birthday but that was not going to to stop him from being 7 years old on that day. I said that that is how we measure time and we can not stop time from happening just because he did not want anymore Birthdays and wanted to stop 6. I can not say that he was happy with this but that is the way things are and as I have said there are some things that even we Mums can not stop from happening. In addition I would like to add that my eldest hated having to have any fuss at all on his Birthday he just used to like it to come and go with no pressies, cake etc. Yes it was upsetting for me and the rest of the family but is was how he coped with changed and that was more important to me than having to mark the day in a way that he found difficult to cope with. It is only another day and it is our expectations and not the child's that we usually try to adhere to. We actually tend to do Birthdays in our house the day before so we get the gifts and everything out of the way so that the actual day itself is just a normal day. I have no idea why this works but it does. The youngest did celebrate his 7th Birthday after all because after I had made it clear that no one could stop it from happening, and after I also made it clear that I was no longer going to be engaged in conversations about something that I could not change for him,I know that that might sound really harsh and it did upset me but I ran out of places to go with the conversation. He decided that if he was goint to have to be 7 anyway that he might as well be 7 after all. Growing older is something that quite a few children on the spectrum find it difficult to handle and for my eldest it was linked in with growing old and dying. It can be very painful for the child and for us to find a way to live with the fact that we all age. I found just being honest was the best way for us to go. But of course being sensitive and caring at the same time. Cat

The results of the AIM-SEN/Barriers within the System can be found on our blog. Again many many thanks to all who responded to the survey. http://aim1he.blog.co.uk/ Cat

Great BIG Thank you to everyone who responded to the AIM/SEN in the system survey. We have now reached our target of 100 responses and the survey has automatically closed. I will post a link to the results of the survey as soon as I can. Cat

Thank you Cat

Autism-in-Mind will be meeting with the Lamb Enquiry Team, including Brian Lamb, next Thursday. We are trying to gather some information wrapped around parental experiences within the school system to present to Brian Lamb. We have set up a very short survey which can be found here. http://www.surveymonkey.com/s.aspx?sm=mTFJ...EeajpVuuQ_3d_3d There are only 7 questions most of which require a yes/no type of answer but you can leave a comment if you wish to do so. All responses will be 100% anonymous we are not collecting any personal data at all. It would be good if we could give Brian Lamb a snap shot of life in the school system with a sen/disabled child. Please feel free to forward this to anyone that you know who has a child with a sen/disability who would like to take part in the survey. The Survey will close automatically after we received 100 responses. Cat

Cheers Cat

Here is the link needed to join the forum and other ways of participating in the consultation http://www.oladultautism.org.uk/. You have to register an interest in taking part. I had not realised that it was necssary to register with Opinion Leader first - I was asked to be Guinea Pig while they were testing the forum and so I was already there. I have been told by Opinion Leader that 'The reason that the community is not open to anybody that comes across it is so that it is a safe and private place for people to discuss their issues and experiences, and that it allows people who may not always have a voice to give their opinions as well as those who are already active on the internet.' Not sure that I agree with this but hey ho. Cat

The official Department of Health forum which is discussing the Adults Autism Strategy is now open you can find it here http://cw.thewebfellas.com/communities/22 Cat

Many apologies. If you rang me I never received any messages from anyone to say that you had done so and I did reply to both of the your mails. I will forward a copy of my responses to you. Cat

I agree that the school should have got their act together without you having to take drastic action. It is wrong that parents have to Police the system and I always tell parents that they really need to clue themselves up and know what a school should and should not be doing when a child is on school action plus, not just in our LA in any LA. But if the AOT, PP and in fact the LA were until last week unaware that you were having these problems and issues they could not hope to sort them out. I have no idea if these people were already involved. But after one meeting with the input of others and of course because you made sure that you were not going to be ignored hopefully things are now going to change. As it stands at the moment schools do not have to ask for input from the AOT and the AOT have no right to access schools unless they are asked. EVERY school in our LA now has a copy of 'The Autism File' which was produced by the AOT and which has been specifically designed so that schools are aware that the team are available to them and is full of information and contacts that school could or should require. They are working hard in our LA to improve things in our schools. I can not quite believe I am saying this but they are. The AOT team are excellent and really do know their stuff and our PP officer works hard to. Things are far from perfect I know but some of us continue to keep our foot on the pedal for change and we are now listened to. Cat

Actually we have one of the better LAs believe it or not. Our AOT is award winning and if they are brought into the mix that will 'hopefully' mean that the school will deliver. Sometimes you really need to be specific about what you want and asking for it. Cat

We did this when my eldest hit 21 and my Mum hit 65 and my husband graduated all in the same week. We had a big family party which I knew was going to be really difficult for our middle son, but I wanted to told hold anyway so that my eldest in particular did not miss out on his birthday. The youngest is also autistic and was only 3 at the time but I knew that he would cope with it all even if it did make him even more hyper than he normally was. It did but no one appeared to notice that. I was fully aware that my middle son, who was then 13, was going to have huge issues and we even discussed him not going but he wanted to. My eldest had a friend who got on really well with my middle son and he kindly offered, which was really brilliant of him, to take DS2 under his wing on that night and he did. He sat with DS2 all night chatting to him and even moved into a much quieter room at the venue at one point but it was done quietly without any fuss. It was all done in a way that it looked as if DS2 was sitting with friends of my son, which he was, but with one of those in particular making sure that DS2 was fine. To be honest with you I can understand your eldest and how he is feeling and yes I know that it is so difficult for us when we have more than one child and one of those has quite specific needs, but his wedding is his and his girlfriend's big day and sometimes I think out other kids need to take centre stage. It is so difficult. Hope it all goes really well for all of you. Cat

I live in your LA and also run a support group there. Do you want to contact me off list? Send me a pm I might be able to help you if you wish. Cat

I am in no way suggesting that your youngest has an ASD. Just wanted to point out that even when living with ASD it is not always possible to use how one child is presenting as a yard stick for another. Cat

While I can fully understand your disgust and anger I am not sure that I would of sent the letter that you have written but that is just me and we all have different ways of doing things. What I would probably suggest you do now is to request another meeting to be called to address the concerns that you feel were ignored where other parties are involved if they were not already. I would also ask for the meeting to be minuted it is then harder for your concerns to be ignored. Was, for example there anyone at the meeting from an Autism Outreach Team or any kind of SEN specialist team? A professional from an Autism Outreach Team would or at least should be aware that a child with autism is not always able to 'tow a party line' and would be able to input this into the school. Do you have a parent partnership officer whom you could involve in your battle for whatever it is you are seeking. If your son is on School Action Plus then the school have access to all of the professionals who they require to go into school to help them to understand your son and therefore help your son. Are the school accessing these people? Are they attending review meetings? If not they why not. If you do not already have a copy of the SEN Code of Practice then I would suggest that you download one from here http://www.teachernet.gov.uk/wholeschool/sen/sencodeintro/ this really is the book you can throw at a school, not literally of course, if they are not taking the correct steps to support your son. Going public would be my last resort as there are many other paths you could take to make the school sit up and take note first. You could for example involve the SEN Governor and write to the Governing Body with your concerns. Of course if you have tried all of the above and nothing has worked then that is a whole different ball game. Cat