Cat

I am really pleased to see that Sensory Issue have made it into the report (especially so as I have been banging me drum and continue to do so that sensoy issues must be given a much higher priority within the Adults Stratgey) as being a significant other which can run alongside the triad. I am sad that it has taken this long for the powers that be to recognise what many of us have known for years. But at least when I go to do battle again with the DOH next tuesday re sensory issues and also biomedical issues, which I have so far not spotted in the report, although they may well be in there. I can go with the weight of this report behind me. It's a long road ahead of us before we see the much needed changed that everyone on the spectrum deserves no matter where on that spectrum they reside but we will get there if we keep our foot on the pedal. Cat

I too have video evidence taken after my middle son had the MMR. He was one of the first to have it and he was 3 when he did have it you can certainly tell if a regression is occuring when they are 3. Looking at videos leading up to the MMR is like watching a different child. Within 48 hours of having the jab he had his first ever convlusion and to be quite honest his general health continues to be very poor and an issue. Up until his third birthday he had only ever had one bout of illnes and that was at the age of 10 months. When my son was 11 years old he had a booster because there was an outbreak of measles outbreak. The aftermath of that was something else again although at the time I did not realise what had triggered this much worse regression. Even my sons school said that they had never seen a child change so much in six weeks. I am not sure that anyone has ever said that the MMR causes autism and I for one do not believe that it does but I can accept that for 'some'children it could act as a trigger for autism. I firmly believe that autism is in our family. My youngest did not have the MMR and he is autistic BUT we did not have the regression with him and I knew from him being 10 months old unlike his brother who was find right up until he had the jab. So although some people would say case closed I am not one of those people. They often say that seeing is believing and it was for us. Cat

The stress and anxiety that ASD can have on siblings is something that is all too often swept under the carpet. If it can stress the parents out then imagine what it can do to children? I have been doing some digging I know someone who is involved with a national group supporting children with OCD and they tell me that violence within OCD is very rare. It can happen but it is rare. If you spend sometime looking at the net you will see that for yourself. The elder of my two sons was not diagnosed with his AS until he was 13. When I talked about him to people (hoping that they would listen) I would always say that living with him was like living with someone who was on a trip switch and I never knew when, where or why his switch would trip. I never suspected that my son was on drugs because he never left the house but I was frightend of him and we to have lived with someone waving a knife around in our direction. Apart from the OCD does your son have any other issues? It is all too easy for CAMHS to put everything down to OCD here. If there underlying reasons, like extreem stress and anxiety maybe because he is also living with ASD they also need to be addressed. I too have an elder child and although he is 8 years older than my middle son I still feel guilty about the amount of time I lost with him because of his brothers. Sometimes we need to be very pushy with the professionals and make them listen to us. Who on the CAMHS team deals with your son and are they aware that your daughter has autism? Cat <'>

<'> <'> <'> Julie I have a very limited knowledge of OCD as a standalone condition. I have two sons with autism and one certainly displays many traits of OCD which tend to increase his levels of anxiety but not usually his levels of aggression and he can be quite aggressive. I wonder if your son could also have something running alongside his OCD now - maybe mental health issues. My understanding is that people with OCD are rarely violent, not saying that they never are but it is rare. That is why I am wondering is there could be something else. I know my eldest can be verbally abusive and aggressive and displays challenging behaviour at times. I am sure that CAMHS have looked into this - have you asked them if there could be other issues? The teen years can be especially difficult for some children and more so for those with issues but you can not allow your son to threaten you or use you as a punch bag. I would would be asking questions of CAMHS were I you if you have not already done so. Cat

My son would never take medication to help him to sleep and I know how difficult it can be. One of the best things that happened with his sleeping issues was that 'I' learnt to live with them. I recently heard Dr John Biddulph who is an autism professional, working in schools and who has AS speak. Hearing him speak about his sleeping issues really helped me to come to terms with the fact that my son may always have sleeping issues but that he to can learn to live with them. 15 is a difficult age for all youngsters and I suspect more so for youngsters with autism, it certainly was a tough time for my middle son. He spent his whole life worrying and becoming anxious. I ended up dragging him to see his psych about his sleeping issues and although he had told me that he would refuse to speak to him he did talk to him and flatly refused meds even though he had said he wanted something to help him to sleep before leaving the house. At 15 I do not think that they could force the issue. It does get better - well it did for us. By the time my son reached 16 he had started to turn a corner with many of the things that he worried about only one issue remained - sleep. Cat

Tally I will check this one out for your tomorrow. I am part of the External Reference Group (ERG) and one of the biggest issues that we are addressing is easy 'access' for adults with autism to enable them to participate. The ERG has autistic adults working on all 5 of the chapters and they attend without carers or parents. I am speaking to the researchers tomorrow about participation in the consultation and believe me I now have quite a few issues that I want to raise with them. Cat

The thing is that many babies like routine and cry when you change things. Although I had a gut feeling about my youngest I was not looking to label him at 10 months because all babies are different and do different things at different times. I have two on the spectrum who could not be more different and presented totally differently. It was not until my youngest went for an assessment that many of the things that he had done or cried about when he was a baby fell into place. I would try to enjoy your daughter (I enjoyed every second of my son) and try not to dwell on all of the things that she is not doing. She is a unique little person all in her own rights. Cat

I personally knew that there was something going on with my youngest son from him being 8 months old but there was much more to it than him not making eye contact or rarely laughing. He was for the most part 'the no bother baby' and that was how the family referred to him. Our son was happy smiling and no bother. But there were things that I knew were not right. For example we were unable to change a bottle, dummy, feeding cup, duvet cover without him becoming hysterical. It was the only time we ever heard him cry. Nothing else upset him. All of his things always had to look as he expected them to look. A new cup or bottle would leave him sobbing his eyes out. I well remember one night he was sick and we had to change his duvert cover. The moment we tried to put him back into his cot he stiffened his body and screamed. This went of for two hours when we gave up and let him sleep in his buggy. It was his buggy that proved to me in my head that there was something really going on. The buggy snapped one day while we were out. My son was 10 a half month old by this time. We of course needed to buy a new buggy. It took us two months to get him to go into the buggy. Routine and change were massive issues for our son from a very early age. He would also watch Telly Tubbies on TV all day if we let him and not only that he would watch the same episode again and again. I always used to sit and sing to our son before he went to sleep and by the time he was a year old if I changed the order of the songs that I always sang him he would again become hysterical. These were the issues that worried me. He was however was very advanced in some ways. He was walking at the age of 8 months our HV could not believe it when she came to do a 9 months check. His speech delay was what finally triggered some action even though I had been raising concerns from his being very young. So yes I did notice very early on with my youngest. He was not however diagnosed until he was 3 years old. His elder brother, who never did any of the above from an early age but started to regress when is was 2 and a half is also autistic but was not diagnosed until he was 13 6 weeks after his brother. So there was quite a bit going on with our son that did stand out and not just his lack of eye contact. Cat

This is quite true Pearl (however) the bulk of what needs to change is going to be covered by the Adults Autism Strategy and although that is included within the Act now, which is good news for sure, it will only be subject to section 7 guidance. It has taken me several weeks to get my head around section 7 guidance (I hate that word because it always screams at me that an LA will find an out clause if they can). However Phil Hope appears to be taking as many measures as he can to close up the loop holes. The BIG ISSUE is going to be what is included in the Adults Strategy which is why it is important that as many people as possible respond. The recommendations that the External Reference Group made were at last published this week and while they do not go far enough in my opinion, even though I am part of the group, they do make a good start at finding the way forward. The one thing that so far the Bill or the Strategy does not make provision for is a vehicle to drive through what should come with the Bill and the Strategy. Without a vehicle which would give Local Authorities no choice but to develop joined up thinking and working practices it could take years for any of the changes to come into being and if we question this we will be referred back to the Act. That is why I believe that we need an equivalent to the Valuing People Learning Disability Partnership Boards, which is the vehicle that has been used to drive through 'Valuing People' It's not perfect and still requires some fine tuning but it is a structure that could be adopted and used for us. Better still if an Autism Partnership Board was also tied in - in some way - to the National Performance Indictors. So we need to make sure, again in my opinion, that the Startegy includes something which will drive through the change. OK Enough of the party political broadcast. I shall get off my soap box now. Cat

<'> Subjects that we might well not want to think about but would be being silly not to. Did Joan Humble say much about the Autism Bill? I would love to know. I am pretty up tp speed with sex, criminal activities and nightmares (I live one much of the time) Cat

That is why it is important that you speak to someone and bring them up tp speed. It would be terrible if a lesson that he loves is ruined because of lack of understanding. Your son is also at an age where he is approaching puberty and this might increase the need for coping strategies. The school also needs to be aware of this and to be prepared to work with you on that one. Hope it goes well. Cat

This sounds like a coping strategy/stim to me. You can not take away something that an autistic child needs to do to help them cope and not give them a replacement. Rhyming words in his is fine it's other children hearing those mutterings which is not so fine. I would be having a word with the teacher/senco or whoever it is appropriate to speak to if I were you. A gentle reminder that he should keep his thoughts to himself would be appropriate but not sending him out of the class. The Disability Discrimination Act says that schools have to make reasonable adjustments and that means they make adjustments to support a pupil not punish them. However the school need to be aware of these things before they can make adjustments. Cat Rachey

My son certainly did vomit in his sleep in fact that was usually how it all began with him. It is very scary and because it was happening so often with our son we had to move him back into our room. We first heard the words Cyclical Vomiting Syndrome in A&E where we had just been told that our son was severely dehydrated. The doctor who saw us said that she suspected CVS but wanted us to see her boss a Consultant at the hospital who would be able to diagnose. She arranged the appointment for us and CVS was confirmed because of the history and the nature of the vomiting. Like Nellie's son our son hardly ever brought back food it was always acid, which has stripped the enamel from his teeth. The Consultant told us that CVS is still a little known syndrome and if often misdiagnosed. We actually became quite well known within A&E after that because we were back quite a few times because of the syndrome and our son was always fast tracked because of his autism and dehydration. I know that our son had probably the most severe form of this syndrome. At the onset he could vomit up to 50 times per hour often not waking up to do so. It was very frightening indeed. Even now our new Autism Consultant who is lovely wanted to put his CVS down to anxiety, which yet I know it is, but the extreme anxiety results in CVS. I would not back down and so our son is still recorded as having CVS. It's not as if we want him to have it but from speaking to some adults with autism who clearly had/have CVS although never diagnosed many also developed symptoms of Catatonia as they got older, which again is a condition which often goes undiagnosed and is simply put down extreme anxiety and distress. Again it is often the anxiety and depression which triggers Catatonia but it is a condition in its own rights but which many clinicians have very little understanding in which Pat Howlin stated in 1997. But because the anxiety and stress can lead to other issues we wanted the CVS to remain on our sons records. I am so pleased Nellie that you have contacted the CVS people - maybe they could/should carry out some research into this. Of course parents who have autistic children and adults who have this syndrome probably do not even realise that fact because there is so little understanding of it even amongst medics Cat

Anonymous allegations are treated just as seriously as any allegations that have a name attached to them (either way SS never reveal their source of information) if they are wrapped around suspected abuse. Emotional abuse can be just as damaging as physical abuse. Cat

CVS is sometimes called stomach migraine and is closely linked. We were very fortunate that we saw the right doctor at the right time - mind you we had to change GPs before we managed to see the right doctor at the right time. As Nellie says CVS almost always begins during the night or first thing on a morning. To this day if our son is sick at any other time I rule out CVS and know that whatever made him sick is something else. We had great fun trying to get a doctor at a walk in centre to believe that his vomiting was nothing to do with CVS when he started showing symptoms for appendicitis. But we knew that because he started vomiting before he went to bed it was not CVS related. Like Nellie I have often wondered if CVS could be more prevalent in the autistic population. I think that maybe some doctors simply put the vomiting down to stress and anxiety and do not look deeper into it to see if there could be a significant other involved. I really hate autism being referred to as a jig saw puzzle but I can live with Donna William’s fruit salad theory because there are so ingredients that go into the condition that we know as autism that I do not think we have as yet come close to identifying and naming all of them. Cat

My 12 year old son's dentist is now fighting to keep his teeth as a result of CVS. His Autism Consultant says that his teeth resembles those of someone who has had anorexia for years. So far our son has lost 6 of his second teeth and the Dentist is fighting to save his four front teeth. Not a nice place to be with any child let alone an autstic child. So there are other issue to consider when a child is vomitting a great deal. Cat

The thing about the AET is that there are parents and children participating actively as part of their structure. There are parents who are Advisory Councillors and at the moment they are looking for a parent to be on their Steering Group. I went to one of their events in Carlisle (actually I ran a workshop there) and what I heard on the day from Glynis Jones and others participating was what I needed to hear. The research work being carried out is extensive and good. I am not suggesting that the AET will change the face of Education over-night it's not going to happen but they do appear to be listening and then acting which is a good place to begin. Cat

http://www.autismeducationtrust.org.uk/en/...9D221C&_z=z This link should answer some of your questions Sally and you are quite right the piece on page two does read as if a diagnosis of autism will result in a statement If only Cat

If the school has agreed to the part time schooling the chances are that they will not be marking the child down as being absent. This is a similar situation to when a child is sent home for whatever reason and it is not put into writing. That is called an illegal exclusion. The school has probably talked this through with someone in the LA at least they should have done. If both parties are happy with the agreement, parent and school, then I suppose that there is not really an issue however wrong it may be. This could well be the school's way of trying to make sure that there as much support as possible written into the statement. I am a home educator and have been for many years now. I removed my youngest from school because he developed something called Cyclical Vomiting Syndrome (they were not meeting his needs) and he was really quite ill with it requiring hospital treatment on several occasions. We were told by a consultant that stress and anxiety can trigger this illness and we were quite sure that it was something that our son had no control over. Had I at any point felt that he was using the vomiting simply because he did not want to attend school then I would of played things quite differently. I think what I am trying to say is that if you decided to home educate your daughter do so because it is something you want to do. (Even if the reason behind that choice is because the system is not meeting her needs) If your daughter goes into home education thinking that it is a battle that she has won with both school and yourself you could be in for a very rough ride. I am someone who truly does believe that children should not continue to attend a school that is not meeting their needs and that they are suffering as a result of this. But I also know how difficult it is to regain the power from an autistic child who believes that they can win battles by simply engaging in some unacceptable behaviour. Been there and done that with my eldest autistic son and take the power base off him was not an easy task. Cat

A little bit of cynicism does not do any harm. It helps to keep us on our metal and I think that that is a good thing Cat

Yes I was quite impressed overall. It covered 'almost' everything Cat

This could be something that is tied into the fact that Ben is changing schools. Where I live these people all tend to become re-involved at times of transition. SALT is not usually available in our Secondary Schools it tends to cease at the end of Primary so it could also be a signing off visit? Even if I were wondering why I would allow the visit probably because we have found that every report that we have had from our specialist SALT has always been the most detailed and has given the clearest overview of our son and where he was at. Cat

People who are not qualified to do so should not be offering their opinions to you about what they 'think' as opposed are qualified to state. Well not at this moment in time they should not be. I know several females with autism and the majority of them bother about their appearance. I saw Wendy Lawson a few weeks ago and her hair was as up to date as it could possibly be. I am no psychologist but I also know one young lady with AS who has OCD and her OCD makes her totally obsessive about her appearance - how would your psychologist explain that one? I have two sons with autism and while it could be said that they sometimes have problems getting a joke it is something that has gotten much better for both of them as they have gotten older. Both of my sons have a wonderful sense of humour and the elder of the two is now king of sarcasm. And while the eldest really could not care less about his appearance my youngest is just the opposite. He cares very much about the way he looks and he is a boy for goodness sakes. Try not to let this bother you too much. You could always take a long a copy of one of Tony Attwood’s book about Aspergers Syndrome and girls and give it to your psychologist the next time you see them. Will this have any input at all into your assessment when it takes place? If the answer is not I would not spend too much time worrying about what they said to you today. Cat

This is what I got from the Autism and Education Trust (AET) earlier today. Cat AET Supplement in the Guardian Tuesday 19th May 2009 Look out for the special autism supplement to be published in Education Guardian on Tuesday 19th May. This four-page supplement, in partnership with the Autism Education Trust, will provide an in-depth look at autism education in England, with case studies from teaching staff, families and young people on the autism spectrum across the country.

The Government is adding clauses to the Autism Bill - New Clause 1 - Autism Strategy. This is wonderful but more than ever we must ensure that this Strategy includes EVERYTHING that we need. http://www.publications.parliament.uk/pa/c...13-01.htm#start It is really good that the Government now appear to be supporting this Bill - YES!!! Cat