Colin_and_Shelagh

A question about special schools was asked in the House yesterday special schools

Of course, but there is a vocal pro-inclusion lobby that can make the closure of such schools seem justifiable to the lay person. 'Inclusion' is an emotive rallying cry. Explaining that children have a right to an education in a setting that can meet their needs is, unfortunately, more dificult.

Education Guardian This makes me very angry indeed. Why close a school that is so evidently succeeding?

I have emailed Jacqui Smith via the DfES website asking for the source of her figures. I will of course post any response on this board! Colin

Hi Annie She was on Newsnight with somebody called Philip Garner (?) who is apparently an academic. He was clearly an inclusion fanatic who said that he 'didn't recognise the educational landscape' portrayed by Mary Warnock. Methinks he should get out of his ivory tower a bit more. Colin

The issue of bullying is addressed by Mary Warnock in her booklet and is one of the reasons why she suggests setting up small, specialist schools. She makes the obvious point that a child who is bullied is not being included. Colin

I have read Mary Warnock's pamphlet and I do not think it can be described as a u-turn. She very carefully describes the thinking that went into her committee's report, the improvements that it brought about, and where she thinks things have gone wrong. Specifically she makes the - to us, as parents of children with ASDs - obvious point that there is a very wide range of disabilites and needs that have to be addressed: "It is hopelessly muddled to treat a need for, say, ramps to allow access to laboratories for a physically disabled child as comparable with a need for constant supervision for a young Down?s Syndrome child who is prone to run away." She calls for small specialist (not special) schools, that can meet the needs of children with ASDs. I think she writes with great compassion and understanding. Colin

I've emailed the Beeb to point out that autism is not a disease! Colin

Her exact words were: I strongly agree with my hon. Friend, and with the National Autistic Society. Previous work by the society and by the all-party group on autism has shown that about 80 per cent. of parents with autistic children in mainstream education felt that they were getting very good support. My hon. Friend has made precisely the point that I wanted to make, which is that the quality of education is dependent on the investment and resources that are put into the schools. Perhaps she made the figures up. Has anybody asked the NAS? You can read the debate on the excellent TheyWorkForYou.com website Special needs debate

'No'. Because Patrick is very bright and is not disruptive (he does wander around the classroom sometimes) he is not deemed to need regular support - this is in spite of the fact that he is hopelessly disorganised. He is School Action Plus. So we are not at all happy. Any help is ad hoc. He is fortunate to have a very supportive and understanding teacher this year, but he begins high school in September and we are dreading it.

Evening Standard article This is particularly interesting in view of what the Conservative Party - and David Cameron in particular - have been saying recently. (I am not suggesting that Cameron would approve of course.) There was an article about Chartfield School in one of the broadsheets last year - possibly The Times. If I remember correctly it caters for children with a number of different special needs, including AS, dyspraxia, and dyslexia and gets very good academic results. The sort of school, in fact, that we wish were available for our son ion our borough. Colin

Telegraph 'Financial constraints'

Hi Been a while since I posted. There has been some good coverage of the debate in the Independent in the last few days. It carried an excellent piece by David Cameron David Cameron which prompted some good letters - scroll down a bit. Letters from the Indy Note the comment about the Tory closure of Chartfield School! The Indy also covered Warnock's re-think, which it supported in a leader. There is another letter today from an educational advocacy officer which has a nice quote from a boy who said that 'I don't want to be a special child in a normal school; I want to be a normal child in a special school'. Colin

These 3 articles formed part of a feature in yesterday's Daily Telegraph about a teenage girl with AS. 'Teachers suggested I was exaggerating.' Hmmm. http://www.telegraph.co.uk/health/main.jht...8/10/haut10.xml http://www.telegraph.co.uk/health/main.jht...10/ixhmain.html http://www.telegraph.co.uk/health/main.jht...10/ixhmain.html

That's OK then. No wait. I remember reading this story recently. http://news.bbc.co.uk/1/hi/england/herefor...rcs/3898209.stm Colin

I've found details of the next Handle introductory course. It's at Highfields School, Huddersfield on Friday 24 September from 6-9pm. Entrance to this session is free. Details from jewatson@ntlworld.com. Colin

Hi Esther We don't know much about DDAT, but yes the thinking behind Handle is to remake pathways in the brain - in the same way that stroke victims do exercises to regain abilities they have lost. However there is more to it than this. Handle also looks at diet, environment, how we take in sensory information, eyesight etc. The Handle approach is used to address a number of neurological conditions, including ASD. We recommend the book. Occasionally there are meetings held to explain Handle's approach, including a free introductory session. We went to one in Essex last year, and we believe there is one soon in Huddersfield. Colin & Shelagh

In May of last year we had Patrick, our 10 year-old, assessed by a Handle practitioner. The assessment lasted about 2 hours. Patrick was interviewed and was given several tasks to do. The assessment was partly to see how well he did the tasks, but more about seeing how he coped with the situation. The next day we went back and had another 2 hour session in which Cathy, the assessor. explained what she had observed and how this fitted in with the Handle philosophy. (We were also given videos of the assessment and the report back session to take away.) Patrick was given a series of exercises to be done each day. We have had a couple of follow-up sessions in which the exercises were modified. They take about 20 minutes each day. Cathy also recommended that Patrick cut back his intake of sugar as much as possible, which he has done. He no longer has cereal for breakfast (he has croissants and bacon), and is not allowed sweets at lunch time (he has fruit instead). Cathy explained that Patrick's systems are stressed. The exercises are designed to help calm that stress. Removing sugar and caffeine also helps. The exercises also help develop those parts of the brain that are under-developed in people with AS. It is not a miracle 'cure', but we have noticed definite improvements in Patrick's behaviour. He sleeps much better ? before Handle he was gioing to sleep after 10 and waking at about 5-5.30. His handwriting has improved beyond recognition. He is more amenable to coming off Playstation and the computer, and he has fewer meltdowns. Handle has a website http://www.handle.org/ where some of the exercises are explained. It is difficult to explain Handle in just a few sentences. We recommend a recently-published book by the founder called The Fabric of Autism. It is available from Anna McCosh, Culter Craigs, Coulter, Biggar, Lanarkshire ML12 6PZ. Price �12.50 plus �2.10 p&p. Colin & Shelagh

Following on from the previous post, from The Independent http://news.independent.co.uk/uk/health_me...sp?story=547162 In search of a cure for autism Parents spend thousands on therapies that claim to help autistic children live normal lives, but most of them are unproven. Now doctors aim to find out what really works By Jane Feinmann 02 August 2004 When Tim was diagnosed with autism five years ago, his parents were told he would be unlikely to speak or make relationships. Now aged seven and doing well in mainstream primary school, he and his family are moving to a new town and a fresh start. His mother, Andrea, believes that only other people's memories of his autistic past will hamper his future as a normally developing child. His advances have occurred as a result of working with an intensive educational intervention programme - paid for by his local educational authority but unproven as a clinical intervention. And in the field of autism therapy, it is not unique in this respect. Of the hundreds of remedies and interventions on offer to the half-million people with autism, of whom 100,000 are children, virtually none has been subjected to the stringent scientific evaluation required throughout the rest of health care. "Evidence-based practice has passed autism by," says Richard Mills, the research director at the National Autistic Society (NAS). "Only eight per cent of the research budget spent on the disorder is spent on interventions. As a result, there is no reliable guidance available to desperate parents. Doctors are just as much in the dark as parents and often less wise because they think they know all the answers." Inevitably, parents turn to the internet for help and the pressure to make the right choices can be overwhelming. There are a dozen or more intensive educational programmes for young children, of the type that have helped Tim. There are flash cards and behavioural therapies, diets that restrict what the child eats or add expensive supplements, not to mention opportunities to swim with dolphins. Drugs are equally under-investigated. Seven out of 10 children with autism are taking prescription drugs, including ritalin, SSRIs, major tranquillisers and anti-psychotics, none of which has been tested for people with autism or adequately studied in children. "Most parents start by believing that the disorder can be cured and throw themselves into researching therapies," says Andrea Spinks, the mother of eight-year-old, severely autistic Emily. "The paediatrician who diagnosed Emily gave us no advice whatsoever. So every time you hear of something new, you get terrified that you're missing the one therapy that will make all the difference." Such pressures can prove expensive. Patrick Armstrong's parents have spent �45,000 in the two years since he was diagnosed with autism at the age of two - a substantial amount of which was not money well spent. Beverley Armstrong paid �3,000 to a "verbal behaviour consultant", who taught Patrick sign language and then left without giving notice. Another �1,000 went on a workshop that would have "taught Patrick as though he was a robot". And �250 went on an hour's telephone consultation with a nutritionist "who basically told me to make sure he ate his vegetables". At last, however, change is on the way. The Autism Intervention Research Trust was set up last month to fund research both to "halt the exploitation and the wasted time and money on inappropriate methods of treatment" and to find out what works. "Good advice, based on impartial scientific evaluation, is very hard for parents and many professionals to find," the Trust's chairman, Geoffrey Maddell, said at its launch. "Yet without effective and timely intervention, the consequences for the individual and the family can be devastating" - implying what many parents believe that, never mind the cause of autism, far more can be done to improve the life skills of children who have to live with the disorder. The Trust, which has the support of leading international academics and will draw funding from the Government and the research bodies, has already begun work by drawing up a list of priorities, based on a survey carried out among the NAS membership. The initial task will be to provide doctors, and eventually parents, with a website that gives detailed information about the latest advances and methods of intervention, including claims that are being made about each therapy and how those claims stand up to scientific evaluation. Parents are most keen to get an assessment of biomedical interventions, particularly diets and vitamin supplements - which are likely to be among the first candidates for evaluation. More tricky will be an assessment of the early intervention programmes, which appear to promise the greatest benefit and, at up to �40,000 a year per child, are by far the most expensive - not least, says Mills, because the wide autistic spectrum means that what works for one child will not necessarily help another. What research there is, and almost none is independent, suggests that at least some children with autism can make massive strides forward. In 1987, the University of California Los Angeles psychologist, Ivar Lovaas, published the results of a (subsequently hugely successful) intensive early intervention programme, teaching cognitive skills to children under four years of age - reporting that 47 per cent of the children were successfully mainstreamed. Since then, other early intervention programmes such as the Son-Rise programme, TEACCH and Growing Minds (which helped Tim) have become widely used on both sides of Atlantic. Beverley Armstrong has also found Growing Minds transformational - though she acknowledges that it takes up considerable time and money. "It's all about joining with the child to encourage him to relate to other people. You follow their lead, so that when he flaps his arms, you flap your arms." Patrick is taught at home with a rota of up to four tutors at a time, with Beverley planning the programme, video taping lesson and regularly visiting the headquarters in the USA, "something I find essential to keep motivated". But it's worthwhile, she says - Patrick attends a mainstream playgroup, uses single words and has near-normal eye contact with people he meets. "He is still delayed developmentally but his progress has been astounding. He is as bright as a button and ready for mainstream primary school next year," she says. She is also trying to raise �7,000 to pay for a week's intensive training for Patrick in the US. Another successful programme, PECS (Picture Exchange Communication System), which encourages children with autism to exploit their often highly developed visual senses, has helped Emily Spinks. Three months ago, she started producing animated stories that are already provoking interest in the art world. "Suddenly, there's this feeling: Em's got something. After all the work for such little reward, suddenly a door has opened," says her mother. Yet there is also deep concern about the "umpteen complaints" that the NAS receives from parents who have invested heavily in their children's future and been disappointed. There's also recognition that the programmes are both very expensive and under-assessed, not least as regards their long-term impact. "Take, for instance, the fact that at two weeks, a normally developing baby is aware of its mother's emotions. Yet that is something that will always remain a problem for someone with autism," says Ofer Golan, a research coordinator at Cambridge University's Autism Research Centre who uses the centre's Mind Reading programme (Jessica Kingsley Publishers) to help eight- to 14-year-old Asperger's children to develop an emotional language. "At a basic level, where children are learning about different emotions by rote, reinforced by rewards, the programme works quite well. But even with a group of high-achieving autistic children, the difficulty comes when they're encouraged to generalise what they've learnt to other situations. One of them asked me: "Well, now I can tell when someone is angry with me. So what do I do now?" There is concern, says Richard Mills, that while children lose the symptoms of autism, and behave in ways that are more acceptable, enabling them to progress at school more easily, they remain autistic. "When they get to secondary school or university, where social skills are needed for survival, there can be problems." Meanwhile, at Reading University, microbiologists have just got the go-ahead for new research, focusing - for the first time since the MMR d�b�cle - on the high incidence of gastro-intestinal problems in children with autism, with the possibility that probiotics, live microbiological food supplements that have been shown to prevent toxic bacteria from colonising the gut, may have a role in therapy. In a previous study, professor Glenn Gibson at Reading's department of microbiology, has already shown that that, compared to normally developing children, those with autism are more likely to have a poisonous type of bacteria, clostridia, in their gut, as well as having a higher risk of suffering chronic constipation or diarrhoea. "It is a particularly nasty bug that can cause a dangerous gut disease in newborns," explains professor Gibson. "It also produces neurotoxins, which can affect the brain - which may explain the link with autism." In the new study, a group of autistic children with high levels of the clostridia, will be given a probiotic drink that contains Lactobacillus plantarum, "good" bacteria that the team has already shown are able to keep the clostridia under control. At the same time, psychologists will monitor the children's use of language and social skills and compare them with another group of autistic children who will receive a placebo. What's certain to emerge from this and the other new research programmes, is that there is no cure for autism. The new research programmes, however, represent a welcome change in clinical attitude to autism - that the existence of a wide autistic spectrum and the lack of understanding of its cause, doesn't mean parents should be left alone to decide how to provide support. As Geoffrey Maddell says: "Research into autism needs to be based on a wholehearted belief in the value of those on the spectrum and the hidden benefits they can bring to those around them. It must help them realise their potential." The National Autistic Society helpline: 0845 0704004; Autism Intervention Research Trust: 0117 974 8400

'Educate my son' A mother has revealed that her teenage son has been kept at home for more than a year because his special educational needs are so severe he cannot go to a mainstream school. Donna Bull says that children like her 14-year-old son Andrew fall through the system and receive no education at all from Barnet Council, acting as the local education authority (LEA). Andrew has a type of Asperger's syndrome which makes him uncomfortable in crowds and unable to attend a mainstream school. Barnet LEA has kept him on the roll of a comprehensive secondary school and has not found him a place at an appropriate special needs school. As a result, he has been at home since March 2003. Despite that, the system trundles on seemingly oblivious to Andrew's predicament, even being sent a letter of congratulation for passing some tests he never even sat. Ms Bull, of Wenlock Road, Edgware, said: "How many children are losing out on their schooling? Andrew has literally fallen through the system, and I suspect there are many more like him. "He was given a place at The Edgware School in Green Lane, but hasn't been since March. And the funny thing is he just received a standard congratulation letter for his SAT results he has never taken them. It is horrendous. I can't fault the school, their special needs provision is good, but Andrew has Pervasive Demand Avoidance, which is a complicated form of Asperger's, and means he has obsessions and compulsions and demand refusal'. He cannot go to big schools, he just refuses. I can't make him go, what am I supposed to do? This is just a catalogue of failures." Ms Bull started trying to get Andrew a proposed statement, outlining the sort of care he needs, from the LEA in February. It was issued on July 13, but the SEN (Special Educational Needs) panel has met three times and still failed to name a school which the LEA would pay for. Ms Bull found a smaller residential special school in Oxfordshire which costs �35,000 a year, but it was too late to secure a place. "Why can't they treat my son's case as urgent?" said Ms Bull. "He just sits at home and is very depressed. The LEA is forcing him to do this, but if I were to keep him off school, I would be in court." Ms Bull said she was prepared to take legal action to force the LEA to educate her son. "They were supposed to give me an answer on July 8," she said. A spokesman for the council said it could not comment on individual cases, and could not confirm how many children were in Andrew's position, although it is Barnet's policy to place SEN children in mainstream schools where possible. He said: "The vast majority of pupils with special educational needs who have statements to attend Barnet's mainstream and special schools do so successfully. In partnership with schools themselves, the local education authority carefully monitors the attendance of pupils at all its schools." 11:23am Thursday 29th July 2004

There is an interview with Rick Stein and his brother John (who is professor of neurophysiology at Oxford), in today's Daily Telegraph. They talk about the virtues of fish oil. John Stein says: "What our grandmothers said is true. You can can aid reading in dyslexic kids [Rick's son Edward is dyslexic], concentration in attention deficit hyperactivity disorder kids, coordination in dyspraxia and even, we think, the social functioning of autistic children." You can read the entire interview on the Telegraph site (www.telegraph.co.uk). You have to register. Colin

From the Independent on Sunday, 18 April 2004 Scientists discover autism link to male brain By Maxine Frith, Social Affairs Correspondent 18 April 2004 Scientists claim that dramatic new evidence shows that autism may be just an extreme version of the male brain - suggesting the condition may be entirely genetic rather than environmental. The research, led by a team at Cambridge University, links autism to higher levels of the male hormone testosterone in babies in the womb. The theory holds out the possibility that in the future pregnant mothers could be screened for autism in the same way that tests are conducted for Down's Syndrome. It also throws further doubt on the controversial claims that the MMR vaccine is to blame for a huge rise in autism in children. Autism is a developmental disorder characterised by a lack of empathy, poor communication skills and a highly systematic view of the world. The latest research, presented yesterday at the annual conference of the British Psychological Society by the internationally respected autism expert Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, is based on studies of babies in the womb to the current point where they are four years old. Amniotic fluid was taken from their mother's wombs and tested for levels of the hormone testosterone. At one year old, babies with higher levels of foetal testosterone were found to have much less eye contact than those with lower rates. At 18 months, they were also found to have slower language development. The most recent research, not yet published, was conducted when they reached four. Children with higher levels of testosterone in the womb found it harder to make friends and were more obsessional. There were no differences between the girls and the boys. Professor Baron-Cohen said: "All our research is suggesting that hormones are having an effect on development. Your chromosomes can make you female but you may have a male brain because of the levels of testosterone. This research was conducted on children who do not have autism and are developing normally but the traits we were seeing in children with higher foetal testosterone are similar to those we see with autism."