Sally44

I would recommend you speak with the NAS or IPSEA about when to ask for a Statutory Assessment towards a Statement. It is right that schools have quotas for EP input, and I too had the same problem as you. The school said they were asking the EP for advice. The EP said school were saying they were coping (and were using the EP quota on other children who were being disruptive in class). But by requesting a Statutory Assessment the EP will have to go in and assess anyway at that time, so it might be worth requesting a SA from that point of view. And, if you have specific concerns about your child it is worth putting those concerns in writing to the various professionals responsible for those areas at the same time you request a SA, because then they have the opportunity to assess those difficulties you have highlighted and make recommendations in their report. If they don't do that you have evidence that you informed them of your concerns, and if they do do that you have evidence ie. recommendations to be included in the Statement. It is always beneficial to be pro-active rather than assume they will do what they are supposed to do. It might also be the same from the CP point of view, ie. if you are referred to them, and then request a SA then the CP may have to do a report within the SA timescale (but I don't know that for sure). You also need a history of at least 2 IEPs which you have to submit towards the SA. It might be worth running your existing ones past the Parent Partnership to see if they are SMART, because our council refuses SA if the IEPs are not SMART because they say the child might have made progress if the right targets had been in place. You can also use any other evidence you have yourselves. And it might be worth starting the SA in the present school that is not meeting the childs needs, because you will have more evidence where you are. If you start it in the new school the LEA may say that the new school is more capable of meeting the childs needs and they may say they wish to leave it for some time to see how the child settles in once appropriate supports are in place. These LEAs are sneaky beggers. But you need to check that delaying the school change is not going to put a placement at risk. So I really would advice you speak with the NAS or IPSEA to make sure you don't shoot yourself in the foot accidently. I did move my son from his previous school because they were failing him so badly. If I had kept him there the solicitor I used was very confident that we would win a place in a private school with fees paid by the LEA. But I was too afraid to keep him where he was incase we lost and I had to keep him in that same school indefinately. So I just told the LEA I was taking him to the ER school in September as they had mainstream (not ER) places available and dared them to deny him access. This isn't action I would recommend, because you are flying by the seat of your pants. But we did go to tribunal and win everything we asked for, including the ER place and transport. And you can appeal to Tribunal if the LEA turn down a SA.

Yes we do use a visual timetable. And yes my son does show a very considerable difference in abilities ie. I agree that he used a huge level of subtefuge to take the DVD. But I think bid understands the problem with someone who has absolutely no concept of time. The punishments we dole out to our children are in proportion to the crime in terms of size and timeframe. When you have a child with no conceptual ability of timeframe you have to work with what you have got. And this wide range in skills is part of the reason we ended up at tribunal because in some areas (as assessed by Ed Psych) he is on a percentile of 93+, which is at the top of any class. In other areas he is <1 percentile. So he has been punished by not going to the theme park. My son has been going on about it for a long time (there are TV adverts throughout the day on TV). So he has been punished in that way of losing something he wanted. The timeframe element of punishment is difficult, because as I said, he has no concept of time at all. He doesn't even get yesterday, today and tomorrow. And the reason I also used the theme park was that he asked straight away if he would be allowed to go to the theme park. So he does understand that what he did was wrong and that he will lose something because of it, and that was the thing he most wanted at that time, so that is what I used as the sanction. I do think that is a punishment that he feels and he definately understands that he has lost that trip because of stealing. Presently we use a daily timetable. I think i'll look into a longer one as that would be more concrete in terms of what is happening when. TBH I was more concerned about why he had thought it was okay to take it. He has said he just wanted it. So I have talked with him about how everyone wants things. But just because you want it doesn't mean you can have it. I will use Social Stories as well. I was just shocked at the time that he had even done it. Thanks for everyones input.

He doesn't get pocket money because he has no concept of it. He has dyscalculia as well as dyslexia. Giving him pocket money only caused more problems because he couldn't understand what was 'enough' money for the things he wanted. And I don't use tokens either because his choice of a reward is way too expensive because again he has no concept of money, so giving him a token scheme where he can choose a reward that is worth up to �10 doesn't mean anything to him and causes more problems when I am trying to explain to him what is within his price range. So we stopped doing anything like that. We have just started with him earning money for jobs he does or helping around the house, and he has said he is 'saving' for a lego kit he wants. But the one he wants is �160+. He has no concept of how long he will have to save for this, and there is no point me trying to re-direct him to another cheaper model. He definately knows the one he wants, and he is saving for it, and it could go either way. He could continue saving and reach his target (because he also has no concept of time). Or he could suddenly announce that enough 'time' has passed according to him and that now he should be able to get his lego kit (regardless of how much money he has saved). He has asked me how many minutes it will be until he gets it, which explains how he doesn't understand either time or counting money. I don't know if removing the theme park visit is such a wrong move considering how I know my son thinks (or doesnt think). He has no concept of what a week is. He just knows that it isn't going to happen because he has been bad, and that it won't happen until I tell him that it is going to happen again. And he has to be good until I say it will happen. It really wouldn't make any difference if it was delayed for a day or a year. He doesn't understand the passage of time or days/weeks/months. Only 'is it on this day'. And if it isn't on this day I have to show him how many fingers it is until it happens. But the fingers might represent hours, minutes, days, weeks etc - but he doesn't know what the difference is between a minute or a year. If it happens again I think we'll have to visit the police station. But I really don't know how that could go. He might be really scared and it worked a treat. Or there might be something he really liked about the police station which might actually reinforce bad behaviour. I think i'll just sit tight for the moment and mull it over for the next couple of weeks.

Maybe they need to tweak the Time Out card ie. give it to him and get him to just leave it on his desk as an explanation of why he has left. And for him to know where to go to and for the TA to go to that area as soon as she sees that he has left and used the Time Out card.

Thanks for the advice so far. I don't think he would be able to cope with being taken into the shop and have to see the manager face to face for example. He doesn't follow language well, so he wouldn't process anything said to him at that time. The reason I deferred the theme park trip was because (a) we have another child who we have promised to take, and ( he knows I am watching him for good behaviour and that he has to earn it within a week. He asked me today about getting new DVDs - that is his only obsession - and I said no because of what he had done. I have brought it up a couple of times today to keep checking he understands eg. can you take things from shops, what will happen if you take something, would you like someone to steal your toys etc - and he is giving me the right answers. I suppose I will have to be extra vigilant. At his old school they did let him take things home with him, but I was not happy with this because it was a case of I would occasionally find something in his pocket and ask school about it, and they would say it's okay for him to have it and bring it back in a couple of days. But I think my fears were grounded because they weren't interested in the implications of this and they never worked out a way that he had to ask for it first. I haven't had any similar experiences since I moved him to another school. The only behaviour he has which I think is related, is that when he sees something when out with the family, if I try to move him on from it he can suddenly disappear and he will have gone back to look at the thing in question. I have lost him on many occasions when out and about. And I have raised my concerns with school about this because if he wants to disappear he will achieve it. When I was a child there was a whole craze of children shoplifting and for a time I did it to. But it is something that alot of children do and grow out of. For those on the spectrum they don't come with a manual. And although they may get alot of it, what do you do if you suspect that certain aspects of the implications or social side of it they just don't get. My husband went back to the shop and paid for the DVDs. I don't think I would have done that myself. It is a small village and now they know who he is. And I can cope with the label of ASD, but the label of thief seems much worse to me - and people do gossip. Anyway, I think i'll just monitor it. If it happens again then all hell will break loose and I will do something to scare him to death. I know that I could tell him that if he steals again he would have to have an injection to stop him stealing and I know that would solve the problem. But is it right to use their fears to control them?

Oh, one more thing. I frequently appear deaf. I don't know why, but I am frequently being tapped by my husband (or someone else) saying that they have been talking to me and I haven't heard them. Autistic children do this alot as well. If your child has sensory issues, these also seem closely related to Auditory Processing Disorder and auditory processing delays and problems processing auditory information, which you might want to look at to see if they are relevant. Tito, another famous autistic boy had no body sensation at all. So his system was totally hypo. He says that he only knew he was alive when he could see his shadow move. Out of interest, does she has any problems with internal sensations such as feeling hungry/thirsty. Is she toilet trained? These are all internal sensations that some autistic adults like Donna Williams, have said that they have difficulty feeling or don't feel at all.

Is that her only sensory behaviour? Have you looked at Sensory Integration Disorder. Is an OT involved with your daughter. I would recommend a book by a woman called Olga Bogdashina called Sensory and Perceptual Differences in Autism and Aspergers. There is also a caregivers questionnaire at the back of this book that our Autism Outreach Department uses, so I know it is reputable. My son also likes this. He says 'it breaks my strings'. So if he is very upset he might lie on the bed and I might roll up and down him or just lie on top of him. Temple Grandin also invented the hug machine for this very same reason. And if course her sensory perception can fluctuate throughout the day. I also find that my son cannot multi task from a sensory point of view. Eg. often if he is holding a cup and I talk to him he drops it ie. he cannot listen and continue to monitor his body holding the cup. He can listen or talk, but not look at you at the same time. He cannot play computer games ie. look at the screen and manipulate the controls. All these types of difficulties can have an impact on their education and whether they can access learning in the classroom environment, so it is worth delving into how she experiences things. As she is verbal start to explain to her that she may see, hear, smell or feel things differently to you. I also have sensory issues, but not an ASD. I feel touch as pain, and touch remains for minutes after being touched. I don't comb or brush my hair, I have to wear only natural fibres, no lace/tags etc. I am always in the same type of clothing and if I change and get used to that I always stay in that type of clothing, so seasonal changes feel very strange ie. bare arms and legs. Smells make me vomit and I find public transport very hard to tolerate because of smells of perfum and hairspray and plastic seats etc. So I would recommend you look into the whole sensory thing and have a word with the OT. They do have equipment they can lend out, but they have to assess for it first. It took 2 years for my son to be seen by an OT, but get your name on the list and start complaining about waiting times. You could also get a private OT in to assess if you think you need more immediate advice.

Maybe I should elaborate. What happened is, we went to our local supermarket Friday night and my son wanted to buy a double DVD of Garfield. I refused. Background info: we have recently had builders in and all our possessions are in boxes around the house, and we cannot find anything! On Friday night, my son bought down a Garfield DVD to watch which he said he had found in once of the boxes (and we do have a Garfield DVD somewhere). So he watched it last night. This morning after breakfast he was upstairs and shouted 'WOW'. When I asked him 'what was it', he said that he had found another Garfield DVD in the packed up boxes. So now the bells are ringing, because I know we don't have two of them. But I am also amazed as his ability to bluff eg. show surprise by shouting 'WOW', because he is autistic, not aspergers. So I questioned him and he told me that after I refused to buy the DVD he had hidden it in his coat. He has then come home and hidden the DVDs in the wardrobe. He has then had enough ability to know that he can only bring out one at a time without arousing too much suspcicion. But not enough ability to understand that I would twig after the second video was produced. Obviously the DVDs have been taken from him. And he has been told that a planned day trip to a theme park is cancelled for this week. But that if he shows good behaviour for the next week that we will go to the theme park. (He isn't too phased by this because he has no sense of what day it is or even what time it is). And he is really mixed ability. He is echolalic and has very poor understanding of language. But he is intelligent enough to know that we he did was wrong. For example he knows about how gravity works and wants to be an astronaut when he gets older (he is 8). So, I know that he knows he shouldn't have done what he did and that it was wrong. He is also impulsive with traits of ADHD. He is aware of his difficulties and is intelligent enough to suggest coping strategies. Eg. when we go into a shop we always talk about whether he can get something or not before hand. Even when that is agreed, when he sees something he wants and I refuse it can lead to a tantrum. He suggested that because 'I can't control the feelings if I go in the shop, I want to stay in the car'. Which suggests to me that he is intelligent enough to suggest a very good way of avoiding his difficulty, as he gets overwhelming feelings that (due to his diagnosis) he cannot bring under control. Because I know he loves to go into the shops to look at the toys so his suggestion of staying in the car is a hard decision for him to make. So, my son has alot of abilities that make him able to understand the basic rights and wrongs of the situation. But he thinks it is rectified just by him being punished and the things taken back to the shops. And I know that children on the spectrum can have difficulties suspending gratification. But he was able to take the DVDs and suspend gratification for long enough for him to produce the DVDs one at a time, thinking he could get away with what he had done. And he did get tearful about it, but his reaction was to say that he needed to leave the house and run away. So all keys are hidden as he has tried to leave before. So he has now painted his body will red spots and has told me that he is very ill. (Taken from the film nanny McPhee). And although I have talked about the police etc, I don't want to talk too much about jail, because I know he would quite like that type of environment. Ie. a small room on his own with a TV. So, I have basically treated the whole event as I would have done for my other child. But is that enough, or do I need to get additional advice? He does have difficulties predicting outcomes. He doesn't recognise danger. We went toboganning on Thursday evening and I went on with him, incase he got frightened half way round and had to be rescued. Infact he was totally the opposite. He didn't use the brakes at all and we went screaming down the hill with me yelling at him to pull on the brakes. He loved it, but we had been going so fast that the attendant told me to make sure he would apply the brakes before they would allow him on again - so it was very fast. And I had to talk with him before we went on again to ensure that he would apply the brakes when I asked him to. So what have other parents done in similar situations?

Speak with the NAS Educational Advisors. Baddad is right, if the LEA do not have a local provison you can go out of county and your local LEA has to fund the place. You can also look at private schools that go post 16. The SENAD group have some. But to get that you would almost certainly need private reports and a solicitor. And please don't believe what the LEA tell you, always check it with the NAS/IPSEA etc. Also connections are supposed to be involved with transition from school and they should have information as well.

Have any other parents had problems with a child on the autistic spectrum stealing things they want from a shop. This something new and totally unexpected. What advice is there on how to address this. Is it worth involving school and speaking with an Educational Psychologist.

After the meeting with the school, you will receive a letter from the LA stating whether they are keeping the statement as it is, or whether any recommendations were made and the LEA have decided to make alterations to take that into account. I am not sure what the timescales for this are. Either way you can appeal against the LEAs decision and apply to SENDIST at that stage. That is why, I have advised you contact the NAS as they now have a Tribunal service where they can support you throughout the process. If you do go to Tribunal it would be worth getting the NAS supporting you because they can check the existing statement and tighten it up if needed. But in the meantime I would still write a letter to the school in terms saying that "at the AR no concerns were raised about my son's behaviour, however XXXX has happened recently and I was informed that my son was moved to a lower ability class because of behavioural problems. Can you please reply by return setting out exactly what the behavioural problems were and what you think were the events leading up to those behavioural problems. Can you please clarify why this issue was not raised at the Annual Review, because the Code of Practice for the Statement clearly states that every need should be included in the statement in section 2 with recommendations from professionals as to how to meet those needs in section 3. I am not happy that my son is having these behavioural problems and I would like the school to also confirm that they have contacted the Educational Psychologist for their advice, and can you please send me a copy of what the Ed Psych recommended. I believe that these behavioural problems are down to my son's diagnosis not being fully understood and supported. I do not see how moving him to a lower ability class is going to improve his behaviour." That letter, if you go to tribunal, is evidence of what happened and what you asked the school to do. It is then in their court to reply to this letter, which should be interesting. Even if they state that this was a 'one off' incident, then that is recorded as evidence (if try to exclude him in the future or try to use other unsuitable measures or punishments) because they have admitted in writing that your son does not have significant behavioural problems. If they say there are frequent behavioural problems, then this is evidence again that they haven't sought outside advice or sought to change the Statement.

I don't know. I had heard that too. Our children's thought processes can be very different. They can be rigid and repetitive and literal, and as you've said there can be difficulties with imagination. I would raise your concerns with them about how they are going to present this. Firstly, I presume that it isn't going to all be verbal dialogue. They may present it in picture storybook form. Sometimes just having the process explained through from start to finish can help an awful lot with anxiety. Eg. explain to her about swallowing and where it goes and that there are two pipes ie. to the stomach and to the lungs, and what makes a person choke, and what the body does to stop that. I have found that when I completely explain it to my son, there are many things that he then gets and isn't anxious about any more.

If your child is coping well academically, but has difficulties with social communication and play, then that is the responsibility of the Speech and Language Therapist. They should assess the child and make recommendations as to targets to be worked on. This might be through a Social Skills group, or specific SALT targets eg. initiating conversation, joining in etc. She may need to be taught rote learnt scripts to help her do this and that learnt script would then be generalised into the playground or other environments. A Teaching Assistant, familiar with the scripts or prompts being used to teach her these skills should be on duty during playtimes so that if she is spending alot of time alone, the TA would go up to her and prompt her to use the script she has been taught to intiate play/conversation or to join in. It may take along time to get to that stage, and much more basic things may need to be taught before that would work. But I think you understand what I mean. A good assessment and monitoring system for these types of difficulties is called SCERTS, and the SALT should know about this. Then there are also things like Circle of Friends, mentoring or buddy systems that some schools are familiar with. And schools that have experience and expertise in ASD (mixed mainstream and SEN), usually have more structured playtimes and also have dinnertime clubs so that the child with an ASD is not struggling without the structure they usually have in the classroom.

If your son gets anxious at having to communicate, then he could use something like a time out card. That is what my 8 year old has. He has been taught how to use it. He has to go to his TA and hand it to her and she will take him out. He doesn't, at this stage, have to say anything to her. She will take him to a quiet place and after a couple of mins she will talk to him to see how he is. We are also waiting for the Ed Psych to put into place a programme for recognising his emotional state in himself and in others. You might also want to have alook at a system called SCERTS, which is for assessing and monitoring all aspects of social communication and interaction. A SALT should know about this system. It is something that all the professionals that work with your son can use (almost like a huge wall planner), which lists all the social skills and abilities and any of the professionals can tick off or highlight areas that the child can or cannot do. So, if the child can initiate conversation on the playground, but cannot initiate conversation in class - then that is the area to be worked on. Because it is quite typical for autistic children to be able to do a certain skill in one environment, but not in another. And although Disability Discrimination Law maybe appropriate if school have not made a reasonable adjustment to the environment, or the system currently used. It is also very important that this need is incorporated into his Statement. Because the statement is a legal document any recommendations to meet this need would have to be done by the school. If the school does not have this legal requirement agains them, then it probably won't happen. I would speak to one of the recommended national organisations to see what they recommend.

The reason I mentioned the difficulties someone would have if they were blind is because that is a disability you can recognise. If someone is visually blind it is obvious and adults/teachers are much more able to recognise what the difficulties might be for that person. When someone has an ASD and is socially blind, or meaning blind, or face blind, or theory of mind blind, etc it is not visible. Therefore the child looks normal, and those who come into contact with that child cannot see the disability. They see the behaviours which result from the disability and call that bad behaviour.

To Karen A: Although I agree with what you say about your son has to live in the real world, he doesn't have the follow the same path as everyone else, and probably couldn't even if he wanted to. The truth is that within the mainstream school environment he has to comply. When he leaves school he will choose what he does and doesn't want to do (as we all do), and he won't do any of the things that he struggles with or doesn't understand or see the point of. As any one of us would do. But the difference is that we make choices out of preference. He is making choices out of neurological differences that cause him to be meaning blind in some situations. And if he really does not get some things, what is the point of making him sit through them. Not for his benefit surely, because he would have to be learning something from being made to comply. But if he has the difficulties associated with an autistic spectrum disorder of theory of mind, for example, then he is never going to see it from another persons point of view, however many times you make him sit through it. And if he has problems with generalisation he is never going to be able to learn something (eg. history) and be able to apply what happened in a past event to how a future problem should be solved. If he could he wouldn't be autistic. If he could learn from his peers he wouldn't be autistic. If you were taken from the UK and placed in a Japanese workplace, how long would you stay there? Would you really stay there and learn the language, culture, etc. Or would you always feel different inside, and not really fit as a foreigner in Japan? When you socialised would you do typical Japanese things, or would you search for things from your culture. Would you watch Japanese TV or would you get satellite so that you could watch your favourite TV channels. And if you had the choice of working for a Japanese firm in Japan or an English firm in Japan who would you honestly prefer to work for. I can bet you a million pounds you would work for the English firm, because that is what you are. So why are we trying to turn applies into oranges? So, although I do agree with what you are saying about having to be in the world, at the same time I know what my son can and cannot do. And I don't expect him to do anything that I would not be prepared to do myself. For many many children in school (and especially mainstream), if we (as adults) were going through the same level difficulties as them in the workplace, we would be off sick with mental illness/stress and anxiety (as are alot of our children). And mainstream school does not prepare them for the outside world. It forces them to be compliant. It doesn't teach them any life skills they need. Or any social or relationship skills that are particularly difficult for those on the spectrum. It doesn't teach them coping and behavioural strategies so that they know what to do when placed in these situations when they are adults in the outside world. They just seem to be forced to do what they have to do and when they can't do it they get punished. Your son must be very high functioning if he is okay at mainstream without supports. Does he socialise with his school friends out of school? Do you think he will be doing the same stuff as them when he leaves school ie. going out drinking and going to clubs and having girlfriends? I know that my son will not be doing that. He moves in a different social network that has different interests and different motivations. He has very little in common with mainstream children and very few shared abilities. And by that I also mean that my son has some abilities that 'typical' children don't have.

To: Karen A I think I didn't explain myself sufficiently. What I meant to say was that if a child can be within a mainstream system and can cope with everything as it is, then they don't need a Statement. If they cannot cope with the 'system' that the mainstream school has for all their pupils eg. during breaktimes and dinnertimes, then those are the reasons why the child needs a Statement and all those needs (including behavioural ones) should be included. Then the child should not be expected to have to fit in with the current system if they don't know how to initiate play and social interaction for example. I am not talking about a child choosing whether they will or won't comply. I am talking about current teaching systems, social systems etc that the child cannot access or cannot do because of their diagnosis. My son has severe speech problems, so I don't expect him to be able to fit with the current system of teaching delivery ie. verbal. He needs a different approach. Therefore I don't expect his school to just expect him to sit in whole class situations and learn as the other children do. He just can't do it. That is all I meant.

My son was diagnosed with HFA at age 6 (he is now 8). The Developmental Paediatrician talked with us about Aspergers and HFA. Firstly my son was speaking two word combinations at 2+ years old. At age 3 I noticed that suddenly he was using alot of words/phrases from TV and was putting it together with his own words, rather like a verbal jigsaw puzzle. This is delayed echolalia, which my son still uses to this day. So his language development was not typical, and indeed how he acquired language is also reflected in how he learns ie. top down and not bottom up. At the time this meant that his expressive speech was 'age appropriate', and SALT were attempting to say so, although his receptive speech was quite severely delayed, he had auditory memory, auditory processing disorder and working memory difficulties. He also speaks with an acquired American accent, and has an unusual voice intonation. So I believe it is mainly to do with speech. However I know that there are many children with AS who also have brilliant expressive, but poor receptive speech. I was happy with HFA because of his greater language and comunication difficulties. I have also found that HFA gets more support than AS because a child with AS is assumed to be okay language wise and typically expected to do okay academically. Also on initial testing by the Ed Psych my son scored a percentile of 93 in some areas (non verbal), and a percentile of 2 in understanding instructions. So there was a huge difference (spiky profile). Another thing we talked about was obsessions and interests. My son does not have this characteristic at all. He has his own interests, but none of them are to the extent of obsessions. And again the DP said that those with AS typically have these obsessions and areas of interest. He is now 8 and has improved tremendously. Infact yesterday he was watching something on TV and said "that was a very funny story, but it wasn't funny for the man it happened to was it?" This seems to suggest to me that he has some theory of mind. He has also recently been diagnosed with Semantic Pragmatic Speech Disorder.

The whole point of the Statement is that it should contain all of your sons needs (each need and difficulty should be itemised) and how they should be met in terms of hours of support, by whom, how often, when reviewed etc. He is in a mainstream school not because 'he has to fit in with the mainstream systems'. His Statement means he has severe and complex needs over and above what the school can be typically expected to supply. Therefore the school has to differentiate work, and use strategies, supports, therapies etc to meet his needs. He shouldn't have to comply with their systems! By saying what they have said they are basically refusing to meet his needs. In my son's old school his teacher told the Autism Outreach Teacher "don't ask me to make one more thing". So she was basically refusing to make visual timetables, visual supports etc for a child with HFA. So she was basically refusing to put into place strategies that would help him understand and access learning! If my son had been blind, I doubt a teacher would get away with saying "don't expect me to learn braille, or teach the child braille, or use any other method of teaching other than writing".

If you and his teachers think he cannot do it, then you need to ask the school to put that in writing to you, or for you to put your concern in writing to the school and to ask them what their opinion is. My son has not sat any tests.

I'm in the East Midlands and we don't get referred to CAHMS. I don't understand why you are being sent there? You need to go to your GP and ask for a referal to a unit that specialises in diagnosing autistic spectrum disorders including Aspergers. Everyone says that CAHMS tends to put the onus back onto the child and family!! Also you MUST speak with the National Autistic Society helpline about how to go about getting a diagnosis in your area. Don't your Developmental Paediatricians diagnose ASDs - our do. Don't your Clinical Psychologists diagnose ASD - ours do. What about Educational Psychologist and Speech and Language Therapists etc. They must all have seen and assessed your son?? Some private schools (specal need), also assess and diagnose. But I would really speak with the NAS and also IPSEA.org about getting a diagnosis and the right support. You can also go private. But you might want to save that option as a backup for getting a Statement.

I like the headline "if you want to be heard you need to get noticed". I'm sure many parents could testify to the fact that their children frequently 'get them noticed', especially on shopping trips! Wasn't this woman on Steve Wright (channel 5) this morning?? It seems that all parents have the same main issue Education. And then After Education. I don't have an awful lot of time myself, but I have taken issues to my own City Council and recently had a meeting with the Director of Commissioning for Services. Who informed me that 'most' parents want their child mainstream. I just don't believe that, as I go to two support groups and every single parent has issues with their child in mainstream. I think 'inclusion' is a mantra with no evidence that it helps. I cannot find one adult person on the spectrum who says that being at mainstream was great - NOT ONE. I think the best is Enhanced Resource (ie. mixed mainstream and special needs), or Aspergers/HFA only schools. But special schools are closing and the LEA is losing those centres of experience and expertise and they cannot be brought back. Because ASDs are a 'spectrum' disorder and every child is different there are a thousand variations of characteristics and difficulties, sometimes additional learning difficulties such as dyslexia, co-morbid conditions etc. There is no way that a 'training day' is going to educate mainstream staff to a level that they can be effective. It is like using a thimble full of water to put out a house fire. What we need is the right level of training and provision in enough schools to meet parents and childrens needs. We don't want a provision so thinly spread over all mainstream schools that it is ineffective. I waited 3 years for my son's mainstream school to train up, and I finally gave up when the school were refused extra funding for supports for my son "not because your son doesn't need them, but because the school could not demonstrate how to use these extra hours effectively". I am prepared to do whatever I can to inform people of what I know. I am prepared to go on a march and sign a petition and write letters. I am prepared to make waves and meet with people and ask them to justify their actions and policies. Although I do go to two support groups. One is just for the children and parents to socialise which is really nice. The other is a local NAS group. I find that the affiliated NAS group has got no fight in it for local issues, local schools, common problems that we all have. There is talk of diagnosis rates may now be 1:60 children. And still there is no definitive answer as to what is causing it. Where are all these children going to go? On a lighter note, if I tried to get into a LBD I would look like a black sausage.

Contact the NAS helplines. Probably the Educational Helpline would be best suited. Or they also have an email service. The Parent Partnership should also be able to help. Does your child have a diagnosis and a Statement?

A couple of you have raised issues your children have with time. Ie. 'in a minute' means exactly that. That is literal interpretation of lanuage consistent with an ASD. Also google Semantic Pragmatic Speech Disorder to see if that is relevant. Children that have no understanding of time have difficulties with executive functions. Google Executive Function Disorder. I found a good website called schoolbehaviour.com, which gives info on a number of disorders including Executive function. Diffiuclties with this area can include, understanding time, planning, sequencing, making goals, etc - ie. every skill needed in the classroom and work environment.

I know the feeling. Get in touch with your Parent Partnership and make sure they come with you to all meetings between yourself and any other professional. Ask them to take notes of what is said and agreed. I have heard different opinions on the PP, some good some bad. Mine were not pro-active, but they do have to tell you your rights and they can be very useful as a witness to what you are being told and they can tell you if the LEA is telling you the truth, and you can also check any information you are given with the NAS helplines. You do have to keep your 'poker face', even when you feel that adult diapers would be quite handy!! But the truth is that if you press, and put all your requests in writing (that is your evidence you asked them to do the stuff they are supposed to do), and you gather evidence that his current school are not doing it and therefore are not meeting his needs. Then the school and LEA are breaking the law. Just keep up the steady pressure and work towards a Statement. And make sure your Statement is fulfilled as per the requirements in the Code of Practice. I had a number of things happen that changed me from being trusting and scared to being just so damn angry that nobody and nothing could stand in my way anymore. The final straw was when my son was turned down by the LEA for extra hours of support in school. When I asked the LEA why they said "it is not because we don't feel that your son needs this extra support, it is because the school cannot demonstrate how they will use those extra hours effectively." What absolute XXXXocks! Excuse my french! So they were telling me the school were incompetent and couldn't fill out the paperwork correctly and had no idea how to meet his needs, yet they refused my application to move him to an Enhanced Resource school that did know how to use extra hours effectively and support his needs. Make sure your son has IEPs and make sure the PP are there for IEPs to ensure the targets are SMART. Through using the PP I demonstrated that not only was my son not acquiring new skills, but that he was actually losing skills and knowledge he already had because they didn't know how to teach him. And I made the school record these loss of skills in his IEPs, eventhough they didn't want to because "we like to be positive about all our children". That isn't being positive that is trying to hide the fact that he is failing under your supervision. All children chould make progress. The only way a school would get away with a child not making any progress would be if they had medical evidence that the child was brain damaged. If the potential and ability to learn is there then the child should make progress. If they don't then the level of support and structures needs to be increased term on term until there is permanent average improvement. I got my son a mainstream place in an Enhanced Resource school - as all the ER places were taken. Once the place was offered to my son, two inclusion officers from the LEA came to my house and told me "if you continue and move your son to XXXX in September he will not be in an ER class. He will be placed in a mainstream class and he won't receive the supports he needs". That is illegal. The PP confirmed to me in writing that that is what they said to me. So I sent a letter to them confirming what they had to said to me, and I explained why it was illegal. And I told them that if they tried to remove my sons mainstream place within the ER school that it would be against the Disability Discrimination Act and I basically ask them to clarify in writing what their position was ie. were they going to refuse him entry to the school or refuse to support his needs. I also sent a copy to the head of the department at the LEA, the professionals involved with my son, my local MP and the SENCO at the ER school he was moving to. Suddenly, all professionals changed their mind and said he could not remain mainstream and that he needed to be in an Autism Unit. That was because there was a special needs school that did have a place available. But my son is cognitively high functioning and this school was not suitable either. So I got private reports and a solicitor. It wasn't cheap. But having been through the process once I am confident I could do it again with the support of the NAS and private reports if needed. The key is to get written evidence. Not words. You need evidence of your childs needs and what supports are recommended to meet those needs. You need evidence that the school is not fulfilling its duty, or is unable to meet his needs because of lack of experience. It will put you in confrontation with the school, but I found that although we did have very uncomfortable meetings and even heating exchanges with the school and some professionals. Everyone was supporting what I was doing and understood and agreed that he should move. In the end it was only the LEA who were going against the advice of their own in house professionals and I had that evidence in writing. When we went to Tribunal the LEA did not attest anything in the private reports. Infact both the private reports were accepted by the tribunal in their entirety and the LEA did not want to add or take anything away. We discussed some wording issues, and these were agreed in terms which were very favourable to my son. The panel are not interested in an inclusion officer telling them how good the current school is, or how hard they try etc. All they want to know are facts. It is like a legal court. They want the LEA to follow the code of practice and when the LEA refuse to agree the tribunal looks at the evidence and makes an award using the CoP. If you don't win everything you want eg. you agree the Statement but not the Placement, you can still appeal against that decision, and once you go to appeal your legal fees are paid for automatically. I know of a parent who continued through more than one appeal, and finally the panel made a judgement that "it was a better use of resources to spend some money on the child now (ie. send him to a private school and the LEA pay the fees), than to have to spend more money on him as a dependent adult." I think that is brilliant! I'm not saying that happens every time, but it is worth fighting to get something better than what you currently have. You really don't have anything to lose.