Cat

Have to agree with this. I think that if this is the way that we are going then it is morally and ethically wrong. I am a firm believer that no matter how clever man 'thinks' he is and congratulates himself if or when he managed to wipe something out, nature has a way of coming up with something new which we need to defeat. Maybe it is trying to tell us something?Why do we all have to be perfect beings? Probably because not being perfect costs money. Cat

Did the paediatrician diagnose your son at his first meeting with him and on what did he base his diagnosis? For example did he do and ADOS test on your son? These days it is considered to be best practice to diagnose and ASD using a team of people or a multi-disciplinary assessment as it is referred to now. The reason for this is so that all of the professionals who have their own area of specialism like speech therapists can see the child and use their own assessments. Then the team meet discuss their findings and a diagnosis is either given or not of the basis of several professionals. Having said this if the paediatrician diagnosed autism then they must be pretty sure that this is what your son has. When you say that a psychologist has told you that your son has not got autism, was this an educational psychologist or a clinical psychologist? There is a BIG difference between the two. One is qualified to diagnose autism, that would be the clinical psychologist, while the other is not, that would be the educational psychologist. If it is a an educational psychologist who is saying this then it is not up to them to question the diagnosis of the paediatrician and I would be telling them this. The speech therapist you are seeing may not be an autism specific therapist ? and again there is a difference ? but their remarks do not rule out autism. Children with autism often have poor concentration and just because a child is verbal it does not rule out autism. A speech delay can also suggest autism. It was a speech therapist who first had concerns about our youngest and he has a speech delay. If you want to see the doctor again then ring their secretary and say that you need to see them as soon as possible. You can then tell the doctor the problems that you are having with other professionals who are questioning the diagnosis. I would imagine that the doctor won?t be too happy about that. Children with autism can often find a school week tiring but if this is the case then what measure has the school taken to try and support your son? Has he got a statement? If not is he on school action plus? Cat

It appears that they don't even understand the basics and can't read either <'> Cat

No one on the HE-SP list would ever attempt to pressure anyone to home ed. Most have first hand experience of how hard it can be and few have turned to home ed without trying everything else first. I have to say that I am feeling as if it's most un-cool to say here that home ed can work and can be fun. Home ed is still legal and most of us are totally sane and not tree hugging hippies (not that there is anything wrong with being a tree hugging hippy). We are already different because we live with autism home ed is just another one of life's differences. What is the point of this forum if we can not offer advice and alternatives when all else fails? Cat

Have you got a support group who could help you? I think that you need to write to the Pead mark it as urgent and say that you need to see them as a matter of urgency. Tell them how many times you have tried to contact them and that nothing ever happens. I would also say that you would like a reply within 3 weeks. Nursery can ask for a multi-agency meeting and that would be one way to get everyone around the table together to discuss your son. The Nursey can also request a CAF (Common Assessment Framework) again this would bring all of the main players together. If you are unhappy with your Pead then it is your right to ask to see someone else. It does sound as if the Nursery are on the ball so see if there is anything that they are willing to do to speed things up for you. It does sound as if your son could benefit from seeing an OT. The Pead can do this and where I live a School or Nursery can also refer. Cat

My advice would be to join this list http://www.he-special.org.uk/ asap. You will get all of the advice and support that you require to home ed Marcus. One of the most recent topics has just been about an other half who did not want his wife to de-register their child to home ed - so believe me we understand because many of us have been there. The books you have ordered are the right ones Looking forward to seeing you there soon - am Cat there to. Don't panic home ed can actually be fun! Cat

Before you buy a weighted blanket has your son been seen by an OT? Has anyone mentioned proprioception to you? Here is a link it is worth reading. An OT would be the best person to decide if your son would benefit from a blanket or not. http://www.thesoundlearningcentre.co.uk/th...oprioception-2/ Sunderland Uni can take a while sometimes to get back to you but they always do. These days Paul Whitely does most of their testing. He is a smashing guy and very easy to talk to. Cat

I suppose it all depends on what a school considers to be OK to begin with? If by OK they mean that thr child is not giving them any problems but are not learning anything then that I believe is not OK. If by OK they means that the child is behving wonderfully at school even though school is winding them up so much that they are exploding out of the school gates everyday then that is not OK either. This is an ongoing issue that many parents that I have spoken to have. Schools simply will not believe that they are in any way contributing to what takes place once the child leaves school. Some children with autism behave well in schools because they believe that they must do so because that is the rule. That does not mean that they understand why they are keeping a lid on their own emotions. I recently helped a family where the child was exploding out of school everyday. A ten minute walk home was taking over an hour some days an hour and a half. The tantrums did not end there they went on right until bed time when the whole family fell into bed exhaused. School insisted that the child was fine and it was nothing that was happening in school which was making the child so distressed. A meeting was set up with the school and along with one of the medics involved with the family. We tried to unpick the school day and what could be creating such an explosive child at the end of each school day. It turned out that the child was so exhausted by 3pm that the end of the day routine of getting his coat, his bag and his shoes and then the bull bait of leaving the school was just too much for him. School were not inclined to accept this but allowed an LSA to help the child collect his possessions and leave by the main doors. It worked from the first day and the explosions stopped there and then. That should have been that but no because the school have never seen what has happened they now want to end the arrangement. The fact is that what was happening in school was impacting on the whole family but school are still very reluctant to believe this which is why I do not think that statements should ever be left just to the school because they do not always hold the knowledge base about the disability that they should. As for medication no child should ever have to be medicated just to enable a school to deal with them or just to take the edge off a child's depression to enable them to be at school. If this needs to happen then the child is not attending the correct school. Cat

I am going to answer both of your posts in one or do my best to. When my son started to tell me that he would not be going to school despite he meant it. He found different ways to Marcus to make sure he could not attend; like making sure that he did not have a pair of shoes left that he could wear, binning his school uniform, and having a good attempt at smashing up his room. This makes him sound like a child who was out of control and willfully determined. I know now that he was actually demented despite what anyone else here or anywhere else might think. I know. I would be very concerned to learn that Marcus has not been attending some lessons and that the teachers appear to be blissfully aware of this fact. I would be seeing the school to make sure that they make sure that he does turn up to his lessons. This will probably mean that he has to have some kind of book signed by every teacher which could well add to his stress and distress but at least you can be sure that he is not wandering the streets stressed and distressed. It is a well know fact that children with ASD usually chose to off-load with those whom they feel safest. That person appears to be you as far as Marcus is concerned. If he is anything like my two sons he will also pick up vibes from people. My two sons would never dare be anything other than on their best behaviour with my Mum and she is actually very good with them, but they both sense that the lady is not for turning when she makes a stand. Not a bad thing for sure but not a good thing if you want to have successful two way communication between someone with ASD and the other person. My sons are easily put off from taking part in a conversation of they think that it is going to end in them having to defend themselves. I have a friend who found a school that she knew would suit her son, took him out of school by actually de-registering him, and then fought the LA for the school she knew would be able to meet her son?s needs. She was honest with her son from the very beginning telling him that if she managed to get the LA to fund a placement at the school she wanted that he ?would? be going back to school. She also promised him that if this did not happen he would not be going back to school. She won her case and her son is now settled in school. It was not easy but it did happen because she did make sure that the school could meet her son?s needs. There are parents here who have had their children at home and have also managed to get them back to school. I never managed it with my son but that was because he was pushed to his limits before I took him out and he had already suffered a complete breakdown. You can fight the LA and win but I think that you need some pretty weighty and clued up people to help you. IPSEA could probably help you in that direction. I am not certain that a sick note will kick the LA into action it might and then again it might not. LA?s are all different and it depends on who is steering their ship. We all want what is best for our kids. I got into trouble here a short while ago because someone felt that I was implying that it is only those of us who home ed who want what is best for our kids. This is not so. We want what is best for our kids and most of us know when a school is not meeting the needs of our kids. If every effort has been made to get the school to change direction and things are still not working do you let your child sink under the pressure? Home ed is a very personal choice and decision not made any easier if your hubby is against this. I could no longer continue to see my sons suffer and yes they were suffering because they did not have the support. My hubby was not as committed as I was but he is now probably more pro HE than I am. I have actually written a paper about AS and HFA and socalisation. I believe that children with AS and HFA need lots of help to enable them to communicate and socalise effectively. Sitting them next to a peer group that they do not understand or whom they have very little in common with is not enabling their skills for some of them it is actually disabling them. I understand that this is my opinion but I am pleased to learn that this paper has now been used by some teachers who are doing a course led by one of our top ASD Unis. My son was 13 when I realized that he was never going to get back to school. That was two years on from his breakdown and in the middle of the worst 5 years of our lives. He lived in a room alone for a great deal of those years. He has now changed beyond belief. He loves mixing and socalising when the occasion is right for him. He was the life and soul of his own 18th Birthday Party and sat in a Restaurant full of friends and family for his 21st. If anyone had told me that this would be possible when he was 13 I would not have believed them. Cat

I know some parents who swear by the gluten free - casein free diet and have had some astouding results. According to Paul Shattock this is because what we eat can affect the chemical balance in the brain which in turn can impact on many aspects of the way we are. If this is true, and I am a great supporter of Mr Shattock, why could dopamine not one of the factors that effect some children in. In the same way that gluten and casein effect some of them but by no means all of them. Cat

Well I know for sure that I changed the recipe greatly with my youngest because he and his brother are poles apart with their autism and how it affects them. This really falls into line with the well known quote often written when someone is talking about those on the spectrum. The quote being that if you know one person with autism then you really only do know one person with autism. Having two sons with ASD has really brought that fact home to me. So if autism really is a fruit salad, and there are more and more people who now believe that it is including some of our leading light professionals, then we will have to become flexible in our approach when someone is being diagnosed with the condition. The triad is far too rigid and in my own personal opinion is yet another little box system of diagnosis which does not fit all. I know that there are moves a-foot to have sensory issues included into the DSM 1V which I suppose is a start but the door is going to have to remain open and a lot of people are going to have to loose their rigidity and open their minds a great deal more if we are ever really going to understand this condition. Nice to know that I am not alone with my thoughts though Cat

I now believe that at this moment in time we really do not know what autism truly is. I no longer believe that it is simply a triad of impairments. I now tend to believe that the triad is brought about by many other factors and is not the cause of autism but comes about as the result of many things which collectively will present as the triad. Autism is still a pretty new condition and it is often stated that we still know very little about it - how true. I subscribe to Donna Williams view that autism is a fruit salad and that there are many different ways to make a fruit salad. I also find Olga Bogdashina's work insightful and very thought provoking. Add this to the work that people like Paul Shattock are doing re the biological side of autism, and perhaps we need to go back to basics and be open enough to question if autism really is simply a triad of impairments. My views have certainly evolved since my sons were first diagnosed 9 years ago and I am pleased to say that ?some? of our leading lights are also asking the same questions as some of the parents I know. Cat

Could you please quantify this statement. My home educated 11 year old is, and has been, an active member of St John's Ambulance Brigade for 3 years now. He is also a member of our local wellness centre and gym where he was chosen to complete a millionth mile for Children in Need in November. He is also a member of a football team and our local Ice Hockey Club. He attends all of these groups and games alone without either myself or my husband being with him. Granted our 21 year old son with AS does go to Ice Hockey with him but that is only because he was the original supporter of the Vipers who got his brother interested and the Area is a 22 mile round trip, so I would not be happy with any 11 year old making that journey alone. At this very moment I have 7 lads who have invaded my sitting room who are all playing games on the wii having just arrived back from a footie game. All of the above says 'real world' to me. I think that part of the problem is that there is a misconception that home edders take their children out of school so that they can wrap them in cotton wool and protect them. Most of us take them out to enable them to live in the 'real world' and not isolate them from it. Also when you take into account that only 12% of the autistic adult population are in 'some type' of employment then us home edders can't really do any worse that than the system is doing right now can we. Cat

I agree with you that a school environment is pretty much a school environment and nothing else to an autistic child unless the school is doing a putting in a great deal of effort into improving the social skills of an autistic child. To do this however they need to have a pretty good knowledge of autism and sadly not many of them do still to this day, something that the All Party Parliamentary Group noted in the 'Half Way There'report last year. It is a well known fact that many children with autism have great difficulty transferring skills learnt in one environment to another. This was especially true with my youngest. He latched onto the school rules like a vice and applied them rigidly in every social situation he encountered which made him less then popular when he was taking part in out of school activities. I personally believe that our children do not simply 'pick up' their social skills from sitting alongside a same age peer group. They need help to acquire meaningful social skills. We were actually asked not to take our son back to a holiday play scheme being ran in our local community association because he was spoiling it for all of the other children. Teaching my son that he had to keep his hands feet and other objects to himself is not something I needed the school to teach him. Although he did attempt to tell his teacher that hands and feet are not objects but part of your body. They for their part ignored him. I was and am quite capable of teaching my son that he has to keep his hands feet and other objects to himself. I needed the school to take on the 'bigger picture' and make socializing make sense for my son much like the NAS ?make school make sense? campaign sadly for many children with autism school does not make any sense at all. My eldest son now works in a Call Centre and I have heard him say many times that our 21 year old with AS could never work in a Call Centre because they are very much like school, because they are big and very busy. He did say that his brother would get a perfect QA because he would remember to ask every question as an advisor you are meant to ask the customer but that he would also be in meltdown before lunchtime. Again I agree with you. It can be difficult for any child who is learning skills which are new to them while they often get them wrong, but it can be disastrous for a child with autism whose self esteem is often low and who having failed once seldom wants to get back on the horse and ride it again. This is made even worse when you add to the equation that there is seldom anyone in the school who understands what falling off the horse actually does to an autistic child. My youngest stuck to the school rules like glue only to find that he was often told to go away and not tell tales when he was telling the teacher/dinner nanny/head that someone had just broken the rules. Of course when a packet of grass seeds were force fed to my son by his peer group who told him that he would then grow a lovely garden in his tummy I was told that the other children were still very young and it was simply horse play. How do you explain to an autistic child that adults often make the rules up as they go along and that sometimes rules were made to be broken? Cat

You remind me very much of an LSA at my sons old school who tried to tell me that because I was COG I had no right to go into school and bang a drum for my own son. If you are worried about what AIM does then feel free to find someone to speak to about it. Just because 'I' chose to home ed does not mean that it has to be everyone's choice. AIM invests heavily in attempting to get a better deal for children with autism. I make no secret that 'I' myself home educate. Everyone we speak to, be they at Government or LA level is aware that I home ed. I am only one part of AIM even if I am the co-founder. I have never attended a metting yet where I bang my own personal drum and because I am not fighting for my own children then it is actually easier to bang the drum as loud as you can because I am not in any way personally emotionally involved. It is wrong to assume that I am unable to detach myself from my own personal situation to fight for other people. I did however make this post as me Cat but I can not pretend that I never mention AIM because have often mentioned AIM. I think that you find everything that I post here inflamatory. I am one of the few posters here who will now openly disagree with you. Speaking of always seeing themselves as being right the words pot,kettle and black springs to mind. I am more than a tad fed up myself with your line of attack and will not be responding to any of your posts in future. Cat

Are you aware that it is perfectly legal for you to home educate your son? We had two different teams of 'experts' playing in our game and they generally made things much worse because the one thing that my son could not cope with was the one thing they are agreed he needed - school. After taking our son out of school we saw a HUGE change in his behaviour. His levels of anxiety and aggression, which had become a big issue, rapidly decreased. The teen years can be very difficult for our children. It becomes much more obvious that they are different and some find that very hard to handle even if they do not want to be like everyone else. Home Education does not mean that you are giving into your autistic child it means that you are tuning into them and trying to do what is right for them. There are now 1000.s of us - and I do mean 1000's - and we all agree that it was the best thing and the right thing for our children. We also agree that communication skills and socalisation skills can improve greatly when the preassure of school is removed. Cat

It is very hard coming to terms with the fact that our children are different. I felt it when my eldest should have been attending his school prom but he told me that it was 'me' who would have wanted him to be there. He could not think of anything worse to do! Being different is not always a bad thing. My youngest and I (he is now 11 almost 12) have long been promising ourselves that we are going to have T Shirts printed saying 'Not a Sheep and proud of it!' My two have qualities which society as a whole could do with. They are truthful, they have no hidden agendas, would never hurt anyone just for the sake of it (even if their sheer honesty can be hurtful sometimes) and generally have a depth to them that others simply can not comprehend and I often think that what people do not understand scares them. My sons are not shallow individuals who are motivated by the latest must have label. They are loving and loyal and have so much to offer - of only society could see that being different can be very cool indeed. Cat

You can not 'make' someone feel independent. You can foster independence but not force it, in my opinion. My son was a total recluse living in his room for almost 5 years. He was out of school following a breakdown so I do mean he lived alone in his room for five years. Yes of course I worried I would be a liar if I said otherwise but I also knew from speaking to adults with autism that puberty can be the worst of time for them. I offered opportunities for my son to socialise and I made him do thing like leave the house to collect any magazines or books. But I gave him the space which I felt he needed at that time. Two years ago when he was 19 he helped his elder brother to do a New Years Eve gig (he was at that time a DJ). He even got up and danced and had the interest of a couple of girls. He has since set up his own You Tube Channel and is also helping some games manufacturers with ideas for new games. While he was stuck in his room I made sure that we topped up on like skills which also aid independence. My son now cleans his room every week without fail including his windows. He changes his bed and his curtain. OK so most 21 year old men would probably not know where the bed linen is kept but my son does. The only thing he can not do is iron and that is only because his also has a visual impairment. I think that the many of our teens use up their coping strategies simply getting through each day. Some people with autism also have an inability to multi-task so our kids can?t do school and also learn to socialise. Some can and do socialise my youngest being one of them. But I do tend to think that we can push these kids too hard with things that will happen eventually given time and heaps of encouragement. Autism is after all a developmental delay so taking that on board should they really be doing what other kids their age are doing? Cat

When my eldest was a teenager he knew that other kids his age hung out and did stuff together but he never for one moment wanted to join in with them. He only ever had one friend and that was enough for him, especially when he went through his teen years. It is often 'our' expectations of what our kids should be doing which we worry about when they are not following the crowd. It is seldom what a child with an ASD wants to be doing. My son wanted to talk about games for hours and it drove me mad so we set a time limit. That did not stop him from wanting to talk about his games but it allowed me to say that he had already spoken about them for the agreed amount of time and so I was not going to listen any more. Having said that old fogie or not I clued myself up on some of the things that my son was interested in so that I could participate in his conversations. Doing this actually helped him to develop the art of conversation as opposed to talking 'at' me. If we can not take an active interest in things that our kids like then there is not hope at all that those who do not live with autism will. This is a very difficult time of year for a lot of people who are autistic and the teen years are the most difficult of all. My son is now 21 and can be the life and soul of the party if or when he wants to be. Not bad for someone who was a recluse who lived in his room for the better part of five years and I really do mean that. Cat

This poem came to me via another list and it had been forwarded from another list. There were no objections to it being cross posted so post away. Cat

Merry Christmas one and all. Cat Autism Night Before Christmas by Cindy Waeltermann Twas the Night Before Christmas And all through the house The creatures were stirring Yes, even the mouse We tried melatonin And gave a hot bath But the holiday jitters They always distract The children were finally All nestled in bed When nightmares of terror Ran through my OWN head Did I get the right gift The right color And style Would there be a tantrum Or even, maybe, a smile? Our relatives come But they don't understand The pleasure he gets Just from flapping his hands. "He needs discipline," they say "Just a well-needed smack, You must learn to parent..." And on goes the attack We smile and nod Because we know deep inside The argument is moot Let them all take a side We know what it's like To live with the spectrum The struggles and triumphs Achievements, regressions. .. But what they don't know And what they don't see Is the joy that we feel Over simplicity He said "hello" He ate something green! He told his first lie! He did not cause a scene! He peed on the potty Who cares if he's ten, He stopped saying the same thing Again and again! Others don't realize Just how we can cope How we bravely hang on At the end of our rope But what they don't see Is the joy we can't hide When our children with autism Make the tiniest stride We may look at others Without the problems we face With jealousy, hatred Or even distaste, But what they don't know Nor sometimes do we Is that children with autism Bring simplicity. We don't get excited Over expensive things We jump for joy With the progress work brings Children with autism Try hard every day That they make us proud More than words can say. They work even harder Than you or I To achieve something small To reach a star in the sky So to those who don't get it Or can't get a clue Take a walk in my shoes And I'll assure you That even 10 minutes Into the walk You'll look at me With respect, even shock. You will realize What it is I go through And the next time you judge I can assure you That you won't say a thing You'll be quiet and learn, Like the years that I did When the tables were turned.......

My eldest son with AS is now 21 and leaving the house is still an issue for him. He has OCD tendencies lots of people with AS have. My son used and to some extent still does, have to check that light switches and all electrical appliances were switched off. He also had to check the smoke alarms to make sure that they were working. It was all stressed related and still is but getting a handle on that one is difficult I know that for sure. If the issue is leaving the house, it was and still is for my son because once he gets somewhere he is usually OK it?s just the getting there, then it is a hard nut to crack. Does your son know that he has AS and does he know what that means? Self awareness and understanding has been the key to getting on top of many of our problems and issues. My sons now understand that their OCD tendencies, they both have them, are part and parcel of their autism. That does not make their OCDness go away but it can help them to manage it themselves. My eldest knows that the feelings he has before he leaves the house are because he has to leave the house, and even if it is because he wants to go somewhere like Ice Hockey which he loves, it is still difficult for him. But he tells himself that he knows why he is feeling the way he is and it helps a little. When he was younger I found that timing his need to check switches and smoke alarms helped a little but to begin with it did make him more manic about it. When he realised that we would not extend the time he needed to check he came to terms with that and stuck to his time allowed. This sounds harsh but giving into the obsession can often make it worse, well it did for my son. It is sad that our children need to learn these things about themselves and I have cried buckets about this but I am now very proud that my two can both tune into themselves and can often stop the obsession from getting out of hand. Sadly there is no magic wand and they are all different. My eldest would never take meds for anything so we have always had to work through these things. Talking helped once his level of self awareness increased and it helps with our youngest who is now 11. But again we often have to set a time limit for their discussions. Cat

I am reading this in the same way that you have. I would be seeking clarification if I were you. Cat

I will sort them out and pm them to you. Cat

It is possible that IPSEA might help you to hang them out to dry. The LA can not ignore the statement and do whatever they want. You could write to a few of the Government big wigs telling them about this. Brian Lamb would be a great one to tell given that he is undertaking an enquiry into this and other SEN issues. Ed Balls would also be a good one to tell what is going on. I have an e-mail if you would like it pm me. There are a few people I can bring to mind. Or you could tell the LA that you will be doing this if they do not get their act together. Mr Balls et all do appear to be listening at the moment even if it is just for show. Cat