Janey

Hi All, I hope this doesn't sound like a daft question, but how do I know if and when the LA has made a decision? Janey

Thanks both, that's helpful info. Where we are with his statement is the LA, the school and Autism Outreach are supposedly discussing provision for a social skills group which is already in his statement! The description of his difficulties needs amending to include his chronic tic disorder and also SALT have discharged him so their contribution needs removing. So clearly there are amendments that need doing amongst some other minor adjustments. I'm a little alarmed that the social skills group seems to be being decided on by the school's ability to deliver such a thing rather than on Toby's needs but until I have a proposed statement in my hands I have nothing to appeal against. Kathryn, the 12 months that you mentioned just to be clear is this from the date that is stamped on the final statement? Thanks, Janey

Hi there, Does anyone know if there are specific timescales for a review of a statement. T. had his annual review meeting on 4th November and I still have not even received a proposed ammended statement. Janey

Hi there, I'm in Leicester as well, I've never heard of the Brandon Unit could you give me some info? thanks Janey

Hi All, Can anyone tell me what an IEP at secondary school should look like and are there any legal obligations with regard to IEP's? Although I know there is a document called an IEP at my son's new secondary school (which I've signed but don't have a copy of) it seems to be just a informative sheet for teachers outlining T's difficulties rather than setting SMART tagets for him, is this right, he does have a statement? Thanks Janey

I have quoted this piece from the Education Act several times to my LA: “S324 (5) (a) (i) states that unless the child's parent has made suitable arrangements, the authority shall arrange that the special educational provision specified in the statement is made for the child.” Anything specified in section 2 as educational provision should be provided by the LA regardless of if it comes from the NHS. In practice this doesn't seem to work as I continually have the argument every year that SALT has not complied. To put intervention in part 5 as non educational seems to relinquish a LA of it's responsibility. Jane

Hi All, I requested transport at T's transition review last Autumn, it was turned down of course. I then got evidence from school, autism outreach and his consultant that he would not cope on the school bus which I knew from my older two children is a complete nightmare. My request was turned down agiain on the grounds that he did not fulfil their criteria as exceptional circumstances whatever these criteria are. I claimed that this was disability discrimination and sent them the relevent section of the DDA Act 1995. I had also managed to find on the LA website a copy of their transport policy which stated only children with physical difficulties would be eligible for reasonable adjustments, this policy was never made readily available to me strangely! My final appeal which threatened the Obudsman as my next move, pointed out that the LA was operating an illegal blanket policy by not identifying the individual needs of my child and also the fact that their policy was discriminatory by only mentioning children with 'physical' medical conditions. Within a month of my victory a new policy was issued! Jane

Hi All, I have to share this major success with you all. After fighting a long and difficult battle with my Local Authority to gain suitable school transport for my son which I won, they have now changed their discrimatory policy of only making reasonable adjustments in school transport for children with long term physical difficulties to ALL children with long term medical difficulties. I am so pleased about this, I fought and gained suitable transport for T. to go to his new high school which has clearly been very successful. The LA had a policy which descriminated against ASD children which they have now changed as a result of my fight. Many more ASD children will now be able to get to school in a state to learn. Janey

Hi Lindy, I don't know if the waiting times are the same in Wales but here in Leicestershire CAMHS have to offer an appointment within 13 weeks for a triage assessment unless the referral is considered urgent. Hope that helps. Janey

Hi there, My ds has had tics for several years he is 11 now and the tics have suddenly become much worse to the extent that they are seriously upsetting him and preventing him from doing things. He has had an urgent appointment with CAMHS this week where although they didn't diagnose Tourettes they did say it was separate from his ASD. I'm pretty sure it is Tourettes he fits all the characteristics. The consultant I saw suggested a technique called Mass Practice where ds has to practice some of his tics on purpose frequently throughout the day. The theory is he will develop neurological links in his brain to be able to bring the tics under control (or thats how I understood it in laymans terms). Apparently this technique has had some good results for other people, today is day one for ds I'll keep you posted how it goes. Janey

My daughter also has sleeping problems, getting off to sleep is difficult and then she will also wake in the night. Up until about the age of 10 she would be scared of monsters in her room and we had to do a thorough spider check before she would even get into bed. She saw CAMHS for a while to help her with these problems and they suggested a few strategies to help. The most effective method of getting rid of the monsters was to draw pictures of them and lock them in a small box that she had, when it was full we burnt them. However to actually go to sleep she listens to story tapes she's 14 now and still listens to them. She still wakes in the night and puts the tapes back on to get herself off again. Hope that helps. Janey

Hi Kevin, I think Garry McKinnon has been well and truly discussed on this forum: http://www.asd-forum.org.uk/forum/index.php?showtopic=22002 It may be of interest to you to read the comments for a picture of some peoples dissatisfaction with the NAS for supporting Garry McKinnon and as such doing a great deal of honest ASD people no favours what so ever. Janey

I thought it was a really good documentary, at last a real view of real autistic people. Something I will take on board is to allow my autistic child to grow up. Janey

Hi All, My youngest son received a diagnosis of Autism two years ago. Since then I have learnt an awful lot about ASD's and can see many traits in my daughter (14), here's some examples: Suffers very badly with anxiety to the extent that she has questioned why other classmates don't worry about relatively trivial things in the same way. Has always been a seriously faddy eater. Used to have very poor bowel control. Has great difficulty sleeping, always waking in the night and getting into my bed until the age of 10. Doesn't really care about her appearance. Phobias, spiders and graveyards. Has only one friend and has managed to isolated herself from other children in her year group. Doesn't like to go out of the house alone, will point blank refuse to run errands. Constantly asks questions that she really should know the answer to. Is very stroppy. My problem is some of her behaviour will certainly be teenage angst but I don't know what is normal and what is not. She also has a diagnosis of dyslexia but despite this manages to get the required levels at school so doesn't warrant any intervention. I know she has developed some good coping strategies and conceals her anxiety from the teachers at school sucessfully. She was seen by CAMHS a few years ago regarding her sleeping, eating and phobias which they never really managed to resolve. Now she wants to try again to sort her eating out so has been referred to my son's Community Paediatrician who diagnosed his ASD. The big question is do I mention that I think she also shows signs of ASD, will it be of any benefit to her or do i just mention her eating problems? Janey

I didn't spot that! Well there we go, the other autistic stereotype portrayed by the media 'Rainman' Janey

In todays news: http://news.bbc.co.uk/1/hi/uk/8192603.stm Perhaps the NAS should take heed?

Just to clarify, the purpose of this thread was to discuss the rights and wrongs of the medias constant need to announce a person's ASD whether they are guilty or not and the inference that ASD and crime is linked. Although Garry McKinnon is a pertinent case at the moment we seem to be drifting off the point and discussing the rights and wrongs of Garry McKinnon.

Well I got a reply from Great Ormond Street and apparently their study is only being carried out in and around London despite them asking for people who live only a few hours away. Leicester is 55mins on the train so hardly what I would consider too far. I was hoping that their research would have benefitted the entire country with their differing educational systems and various communities. Janey

On the GM case my view is that it is the American biased extradition laws that David Blunkett stiched us up to that are the problem, had there been a more balanced policy this might not have made the headlines in quite the way it has. GM's AS was only diagnosed last year aged 40 something, now without wishing to offend some of our members diagnosed during adulthood, if you have managed to make it to middle age and held down jobs and relationships as in GM's case my guess is that you are not too far along the spectrum to have no understanding of right from wrong. What the press are inferring with all the original cases that I listed is that Autism or AS is the reason that these people carried out their crimes. It is also not clear why Garry has so much celebrity endorsement of his plight. Sting and Peter Gabriel have long track records of campaining for human rights not ASD where were they when Barry George was wrongly convicted? Emma Noble and Keith Duffy are well known ASD campaigners. There is a bit of a mixed message being generated which in my opinion is being portrayed in the press as celebrity pity for this ASD "sufferer." Most worrying of all though is the NAS's support for GM. The very people who are campaining for a better understanding and acceptance of ASD are pandering to the presses ignorant view of the condition and tarnishing ALL our ASD friends and relatives, the complete opposite of their intentions. What can we do? Janey

That's exactly my point. Garry Mckinnon's case is what prompted me to post today, but it is not just his case that I think has done a gread injustice to our ASD children. It is the media in general who in my opinion paint autistic people as unpredictable, untrustworthy, potential criminals. When do they ever report successful people as ASD there is an unnaceptable relationship between ASD and crime being built by the media. I too would be fighting tooth and nail if I were Garry Mckinnons mother regardless of his ASD. Janey

Hi all, Just to put my original post right I meant Adam Tait not Garry Tait as posted, can't see how to edit.

The thing that annoys me is that all these crimes could have been carried out by someone without an ASD. I agree that if the media is going to add the "oh and he's got Aspergers" ending at least let the public know the impact this could have on someone. It's the general sweeping statement that tarnishes all ASD people that annoys me.

Thanks for pointing me in that direction Athena, I've just contacted them as I have a child due to make the transition in 2010 and as we have middle schools in my area he will have to go through this twice. Even my NT daughter found it difficult both times. Janey

Why is it that the press do our children a great disservice when they report on criminals who are aspergers or autistic? Let me give you some examples: Barry George originally convicted for the murder of Gill Dando reported as Aspergers Andrew Ibrahain convicted of terrorist bombing in Bristol, reported as Aspergers Garry McKinnon accused of hacking US military computer systems, reported as Aspergers Adam Tait, airline fraudster, reported as autistic. This gives the ignorant general public the impression that ASD or Autistic people don't know right from wrong and must all be nutters. They wouldn't report on a criminal who wears false teeth or who's colour blind for example, why do they need to report on ASD? I get the impression that the reports always suggest that the ASD is the reason for these people's criminal activities which may be to some extent true, but it paints a very gloomy picture and fuels prejudice for most law abiding ASD people. I find this very disturbing for the future of my very rule obeying autistic child, his life is going to be difficult enough without the press suggesting he is a potential criminal. Janey

Hi All, I've not posted for quite a while as everything has been going quite well! Until now... T. came home from school cluthing a permission letter for me to sign for him to take part in sex education. He was so upset as in his eyes, sex is something that relates to 18 rated films/games etc and is outside his rules until he is old enough. I know the content of these lessons is really puberty (T. is in yr5) but as it will involve all those parts of the body that T. already is so modest about (he even turns his cuddly toys away so they can't see him getting dressed) I am not sure how he will cope with these lessons or whether he will linger on the information which he does have a tendancy to do and end up worrying. Janey