Infojunkie

A head's up for everyone in Lancashire: Lancashire Parent Partnership is being absorbed into the LEA and will no longer be even partially independent as of 1st April this year. Parents of children with SEN in Lancashire now have no local access to independent advice and support. It may be worth drawing attention to this as Lancashire shouldn't be doing this! Lobby any contacts you have.

I would recommend 'Dietary Intervention and Autism' by Marilyn Breton. A little dated but has good, straight forward lists which are very useful for a beginner. The recipes are straighforward as well.

I would definately suggest getting medical advice on this. Best to rule out a physical illness first as there is a rare condition (can't remember right now what it is called) which could potentially cause these symptoms. Infojunkie

The website at www.autscape.org is now up and running again. Autscape is likely to be of interest to autistic adults plus those of you with autistic children who are interested in positive approaches to living with (as opposed to curing) ASD. Infojunkie

Hi Bid, Definite costs are not yet available, however we expect the cost to be somewhere between ?150 and ?300 per person. Sorry not to be more definite but it depends on the amount of funding we can attract. Infojunkie.

I am on the organising committee for Autscape and have been asked to post the following 'call for proposals'. If anyone has questions about Autscape I will happily answer if you post them here - but I will be away until Tuesday evening and won't be able to respond immediately. Infojunkie. PLEASE NOTE: The Autscape website is currently down but will be fixed within a week. Autscape 2006, Call for Proposals http://www.autscape.org/proposals/ Event date: Tues to Fri, 1-4 August , 2006 Location: Radstock, Somerset (near Bath) Submission deadline: April 7, 2006 Autscape is a combined retreat and conference organised for and run by autistic people. The second annual event will be held this summer in a peaceful rural retreat centre surrounded by extensive and picturesque grounds. We are now accepting proposals for seminars & workshops to be presented at Autscape 2006. This event is primarily for, not about, autistic people. Workshops geared towards parents and professionals may be accepted, but must be positive in their support for autistic people and their right to be different. In general we would like ideas for positive ways of living with autism and navigating an alien world. To get some idea of what we are looking for, please refer to last year's programme: http://www.autscape.org/programme/ We are also likely to enjoy similar workshops to those that have been presented at Autreat in the USA in the past. http://ani.autistics.org/past-workshops.htm We aim to both stimulate your interest and challenge your skills. We hope to change lives by empowering autistic people to live their own lives more effectively. If this interests you, please see our website for more information, detailed submission guidelines, or to submit your proposal online. http://www.autscape.org/

Hi David, I am autistic myself and also have an autistic son. Welcome to the forum. It is a friendly, diverse and accepting place.

My AS son is Jamie too

I recently got my son's school to delay his statement review after failing to give us enough notice by quoting paragraph 9.17 of the SEN Code of Practice 2001 which specifies that copies of the advices must be circulated at least two weeks before the meeting. I don't know if that will help now the meeting has already happened, but it's a place to start if you want to make a complaint

Hi all, I've posted this before but can't find the thread. I have found http://www.dietaryneedsdirect.co.uk/ extremely useful in obtaining some of the harder to find GFCF items. I don't have anything to do with this company I am just a satisfied customer.

Hi Hollymg, I only have my own experience of this as a child with (at that time) undiagnosed AS. I learnt piano by the suzuki method. Music seems to appeal to many with ASDs, especially classical music - maybe because of its regularities. The only problems I had were - poor co-ordination (I still struggle with this in terms of producing perfect performances, but playing the piano helps improve my co-ordination), frustration at the rigid 'grades' system - I was much happier once I was allowed to play what I liked. Your son may well be very different but it sounds like a great idea to encourage him to try. You might just need to shop around a little for a well matched teacher. I look forward to his future recitals

Hi Elanor, This is definately rubbish. We asked for and received a referral to an excellent NHS dietician who knew all about GFCF for my ASD son. Only catch was I had come accross the dietician in question at an ASD support group meeting and knew exactly who to ask for a referral to! I would recommend asking other parents in your area for recommendations of a good dietician and then asking your GP to refer to circumvent the paediatrician. Or just go ahead with the diet anyway! For info on my experiences on the diet see my post on the Autism and co-morbids thread. Good luck.

If it's any help to those of you considering the GFCF diet I have documented my experience and views here. I was a complete sceptic on the subject of the diet 18 months ago. For those who don't know me, I am an adult with ASD and as anti-cure as they come. I'm still anti-cure, but I have had severe bowel problems and immune system problems my whole life so tried the diet out of desperation. (btw from my history my ASD is probably genetic and my son is on the spectrum too). I went GFCF almost overnight about 15 months ago. To my complete amazement I got really, really ill within a few days of starting the diet! Unbelievable diarrohea, mood swings, rashes, cravings for gluten and milk etc. I stuck with it though. I took me about 6 months to really start getting the diet right as I had to go a long way beyond GFCF (this may be because I am older - before I panic all you parents ). I am now GFCF, Aspartame free, MSG free, DGA free, egg free, corn free, low sals (i.e. no fruit except pears and careful with spices and a few veg such as peppers), rapeseed oil free and tomato free (unless I have forgotten anything). I do an awful lot of cooking, it is quite expensive and it is very hard work. BUT I have a normally functioning stomach for the first time in my life AND I hardly catch any bugs. When I do I shake them off easily without the ear infections, chest infections and every other kind of infections I had before. Much as I hate to admit it, I am also better organised and understand some social stuff a LITTLE bit better than before. It may not be right for everyone, but I would recommend trying it. Ignore the (many many) people, websites and groups who will try to get you to buy in to all kinds of fanciful philosophies and dodgy quasi-scientific theories. The Sunderland Protocol is a reputable place to start, after that "Hear all, trust nothing" (Rule 190 of the Ferengi Rules of Acquisition - Star trek). I would suggest trusting your instincts and your child as to what is working. I would also suggest concentrating on improving bowel functioning and immune system health since these are much easier to assess objectively (and then any behavioural improvements are an added bonus). But don't expect overnight miracles and it certainly isn't a cure. I am about to try my son who is 6 (with his consent and co-operation) on the straightforward GFCF version. We'll see how it goes.

I would suggest 'Pretending to be normal: living with Asperger's Syndrome' by Liane Holliday Willey. You might also check out http://www-users.cs.york.ac.uk/~alistair/survival/ - a web guide to living with AS. Both of these are by adults with AS.

To all who may have watched this program and be considering son-rise: Please be aware that the son-rise approach involves forcibly imprisoning children in their playrooms by locking the door and refusing to allow them out during the 4-hour period everyday, no matter how distressed they become. I do not believe this aspect of the program was fairly or accurately portrayed in the documentary - there was a single shot in which you could just about see the door being bolted, but otherwise this was not mentioned. I would also argue that it is possible to teach an autistic to act NT and that this is what the program does - regardless of how stressful and unpleasant that may be for the autistic individual in question! There are undoubtably elements of the program which are great and totally fine, such as the idea of joining in with a child's autistic behaviours and interests. But son-rise is a profit making organisation who are now using this tv program as the excellent free advertising that it is by featuring it prominently on the home page of their website. These are my personal views and I would not try to stop anyone doing what they believe is best for their child but I wanted to ensure parents considering this have access to ALL the information.

Good on you Lucas. I entirely agree and will help badger them as and when I am able to find the time. This makes me really mad too

Hi Nellie, I really hope he finds the diagnosis as helpful as I have. Wishing you both the best.

Hi LKS, If you need to get the meeting postponed, check what date you received the 'advices' from the school. It should have been (according to the code of practice) at least 2 weeks before the date of the meeting. If it wasn't (and that is often the case) you could write the school a letter quoting the bit if the Code of Practice that says this and asking for a delay which should then be granted. Hope this might help you get a delay.

Thanks Bid, Helen and Nellie for the encouragement. I find it really hard to know when to fight and when not to. The woman from Parent Partnership always seems to think that I should talk to them and meet with them, but when I do that they just say all this completely meaningless stuff and don't change a thing. So I am being millitant. But its a bit scary

You could try a trackball. I used to have one from a company called Kensington. Website is http://www.kensington.com/html/1436.html They require much less co-ordination and are easier to use.

Some of you may know that I have been locked in battle with the SENCO at my son's school. She insists that she is an expert in Autism and knows more about it than I do (I have AS). I find this offensive, particularly as her 'knowledge' consists of complaining that my son (who also has AS and is statemented) is a naughty child who needs to learn obedience. She constantly confuses, frightens and upsets me whenever I go to a meeting. At the moment he is due to have a statement review and I have had to say I can no longer cope with attending meetings that she is present at. However I refuse to be excluded from his review. I have tried (very diplomatically - I had help ) explaining this to the school but they refuse to hold the meeting without her. I have finally got to the point of taking advice from the Disability Rights Commission and have now sent a letter to the governors. I though I would post it here (anonymised version) in case any one else is in a similar position: Dear Sir or Madam, As a disabled parent I am finding it difficult to access meetings about my son. I have difficulty understanding some types of communication and some individuals communicate in these ways more often than others. I have gradually come to realise that it is only meetings at which (SENCO) is present at which I have difficulty understanding what is being said and in being able to express myself as I would wish to. Over a lengthy period I have tried with the help of parent partnership and my support workers to modify my communication style and to ask (SENCO) to modify her style. However, after some 18 months of trying these approaches I am currently left with a situation where whenever I attend a meeting at which (SENCO) is present I have difficulty communicating and understanding. I also then suffer from at least 2-3 weeks of severe depression and anxiety following each and every such meeting no matter how innocuous or uncontroversial its topic. I last attended such a meeting on the _ . Since then I have been unable to attend meetings at school at which (SENCO) would have been present. I have, therefore, asked to be able to attend meetings at school without (SENCO)?s presence. This request has repeatedly been denied. I feel that I am therefore being treated less favourably than a non-disabled parent as I am now in a position where I am unable to be involved in my son?s education without jeopardizing my health. You will be aware of my previous correspondence with (HEAD) on this issue. Having been advised by the Disability Rights Commission I am now writing directly to you as the governors have legal responsibility for this issue under part III of the Disability Discrimination Act 1995. (HEAD) has stated that it is the school?s policy that (SENCO) must be involved in meetings relating to my son?s Special Educational Needs and that the school are not willing for (HEAD) herself or another member of staff to substitute for (SENCO) in these meetings. I am therefore asking you to take a reasonable step to change your policy and allow me to attend meetings about my son without (SENCO)?s presence. The Disability Discrimination Act 1995 Code of Practice on Rights of Access to Goods, Facilities, Services and Premises (paragraph 4.7) requires the school in providing non-educational services (i.e. interacting with disabled parents) �to take reasonable steps to: to change a practice, policy or procedure which makes it impossible or unreasonably difficult for disabled people to make use of its services� The Code of Practice makes it clear that this is your legal duty �Where a service provider offers services to the public, it has a legal duty to take such steps as it is reasonable for the service provider to have to take in all the circumstances of the case in the situations described below. This duty is referred to in this Code as the duty to make reasonable adjustments.� (paragraph 4.5) I would also bring to your attention the DfES guidance on �What the Disability Discrimination Act (DDA) 1995 means for Schools and LEAs: DfEE Circular 20/99�. In paragraphs 55 & 56, this guidance states �Service providers, including school governing bodies and LEAs, where they provide non educational services, must not discriminate against disabled people by unjustifiably: ? ? failing to comply with a duty to make reasonable adjustments if that failure has the effect of making it impossible or unreasonably difficult for the disabled person to make use of any such service. 56. From 1 October 1999, service providers will have to take reasonable steps to: ? change any practice, policy or procedure which makes it impossible or unreasonably difficult for disabled people to use a service;� And in paragraph 63 states �it is the Department?s view that the following activities should generally be regarded as non-educational for the purposes of the DDA: ? ? services offered to parents, such as governing body meetings to present the annual report;� If you remain unwilling to change this policy please provide your justification for doing so. Please respond within 10 days. Yours faithfully, I have found this very hard as I find conflict frightening. I am now trying very hard not to obsess about it for the next 10 days. I hope they will just agree now I won't have to take them to court. I am worried that I should be being more concilliatory and they might be right that I am being unreasonable. But I did try for 18 months and I can't go on getting ill all the time and I won't just go away and accept being totally excluded from decisions about my son's education. What does anyone think? Am I doing the right thing by fighting them on this?

Great news. Hope it works out well.

I would also suggest you get hold of a copy of the ACE 'Special Educational Needs handbook' from http://www.ace-ed.org.uk/publications.html as I have found this very helpful

Hi cjsmum, I'm afraid I don't know all the history of your story so please ignore things I say if they are no help or you have already tried. You are quite entitled to be frustrated at the lack of support you seem to be receiving. Unfortunately the answer to your question about how to get professionals to help seems to be: complain, complain, complain, get informed about the rules and your rights, complain, complain, argue, rant, make a complete nuisance of yourself and complain somemore. Some points you might find helpful: the school should not be excluding him instead of dealing with his special educational needs. he should be on the SEN register while the assessment for a statement is going on, if he is on this register (the stages are called school action and school action plus) the school should be paying for some support for him you may be able to speed up the assessment for a statement by requesting this yourself from the LEA try going to your GP and demanding a referral to another ADHD unit or specialist even if this is out of area and making a complaint about cj's treatment if you don't get one while you are waiting for the appointment to come through try asking your GP to prescribe some medication (if you feel this is appropriate) for a trial period and suggest he phones an ADHD specialist for advice on this - stress that cj has been excluded from school and is at risk of worsening problems while you are waiting if your GP is no help with this, call your local child development centre and asl them to help or try a different GP hang on in there, use this board for support and don't give up Good luck

Another aspect of this is that many people with ASDs need very high oral stimulation - lots of chewing amongst those on the spectrum too!