coolblue

Sorry to disagree mumble, but Michele Zappella in Mary Coleman's book 'The Neurology of Austism' has a chapter about reversible autistic behaviour in autism. Whether or not autistic behaviour is reversible will depend on the cause of the autistic characteristics. One reason clinicians are often reluctant to diagnose young children is because quite a few children appear to have autistic characteristics when young and lose them as they develop. Whether the diagnosis was incorrect in the first place depends on how you define a 'correct' diagnosis. cb

Not quite but my son is 12 with an adult reading ability and can't spell words of more than four letters. He struggles to write as well, particularly if he's trying to write and spell at the same time. He complains that spelling and writing give him a headache, and gets a headache from reading too, which he loves. He has abnormal eye movements, that we haven't managed to get successful treatment for yet. Not much help, I'm afraid, but I can understand how he feels. cb

The LGO would be able to advise you or to direct you to someone who can. cb

I think I'm right in saying that a judicial review applies if the procedure itself causes an administrative or legal or technical problem. Or if one bit of legislation turns out to conflict with another. SEND's job is to handle appeals against LA decisions. So, the LA has followed procedures but the parent disagrees with its decision. A complaint about a local authority not following procedures properly, (or having followed procedures correctly and made a decision that the parent agrees to) not doing its job properly would go to the LGO. So if the school couldn't provide speech and language therapy because they were supposed to access this service via the LA and there were no speech and language therapists available to provide a service, that would be the LA's responsibility. I don't know what happens if the school simply fails to make the required provision and there's a squabble over who's responsible. We have yet to reach that place. cb

Post corrected below.

"Part 5 Non-Educational Needs: All relevant non-educational needs of the child as agreed between the health services, social services or other agencies and the LEA. Part 6 Non-Educational Provision: Details of relevant non-educational provision required to meet the non-educational needs of the child as agreed between the health services and/or social services and the LEA, including the agreed arrangements for its provision." Part 3 is supposed to have full details of *educational* needs and provision. cb

Your temper isn't out of control. You just allowed yourself to get into a situation that other people would walk away from. You didn't want to go to the party, you didn't want the annoying person to talk to you. Trekster is right, learning to say no and meaning it is key. cb

All the things you list are descriptions apart from the asthma and IgA. In other words, your daughter hasn't necessarily got a long list of different conditions, but is more likely to have one underlying physiological condition that has produced to all these symptoms. As Karen says, she's the same person as she was yesterday. I'd start by reading Olga Bogdashina's "Sensory Perceptual Issues in Autism and Asperger Syndrome" because whatever the underlying cause of autism, it's usually sensory issues that trigger problems and Olga describes them in the words of autistic people. I'd also recommend Phillip and Nancy Hall's "Educating Oppositional and Defiant Children". It's practical and very sympathetic.

The system is seriously broken. This shouldn't happen. Would your GP intervene for you? cb

Parents have a legal responsibility to cause their child to have an education suitable to their age, ability, aptitude and any special educational needs. The ‘cause to have’ clause recognizes that the task, but not the responsibility, of education can be delegated. Most parents delegate the task to local authorities, who in turn delegate it to schools. If a child is at school, there is an implicit assumption that the school will act in loco parentis, so if a child needs medical attention, or care, or discipline, or support with learning, during the school day, the school will provide it. The debate about exactly where the parent’s and school’s responsibilities begin and end has raged for decades. Since it’s going to be impossible to reach a consensus amongst parents about what responsibilities schools should or shouldn’t have, I think it’s down to school to make it clear what they are prepared to do and not do, so that parents at least know what service the school is actually offering. I've recently finished an Open University set book on SEN, published in 1981. (Found it at a jumble sale.) Prior to the Warnock report, there were two major problems with ESN provision, as it was then. One was that children with significant learning difficulties were deemed 'uneducable' and so weren't fulfilling their potential, and the other was that academically able children with physical difficulties weren't getting the quality of education they could access in mainstream school, if they weren't disabled. The sea-change in SEN provision that took place after 1979 meant that children with learning difficulties or disabilities were entitled to a suitable education. This wasn’t an insurmountable problem at the time, because schools designed their own curricula and teachers were expected to differentiate learning for pupils of different abilities and aptitudes. A PPS officer (former teacher of the deaf) told me that the original idea of a statement was that children who at one time would have attended a special school, would be entitled to any support they needed in order for them to receive a suitable education in a mainstream setting. Judging by the case studies in the OU book, it was assumed that over time mainstream schools would accumulate the expertise and resources they needed to accommodate all but the most severely disabled children. I didn’t get the impression that children with SEN were then seen as expensive add-ons to the system, who needed specialist provision brought in from outside. The problems began in 1988 with the introduction of increased school autonomy, a compulsory national curriculum, and making SATs/GCSE results a school performance indicator. In addition, research had shown that certain teaching strategies, notably whole-class ones, led to improved test results. These changes may or may not have benefited children in the middle ability range, but for SEN children, the systems pressures set up by these changes were disastrous, because there were now positive disincentives to schools to invest resources in SEN provision. In addition, SEN training was gradually phased out, and mainstream teachers were not SEN trained. How this ever appeared like a good idea is beyond me. I think the law is clear that each child is entitled to an education suitable to his or her age, ability, aptitude and special needs. It’s self-evident, in fact, that if a child doesn’t receive an education suitable to them as an individual, they will not learn well. Obviously, there has to be some degree of compromise, since schools have to educate lots of different children, but if children are failing to be educated because they don’t fit a monolithic system, or because schools do not have sufficient resources to provide an education suitable for children as individuals, I think some serious questions need to be asked about the goals of our education system, and the way it is expected to meet them.

I found this book very interesting and informative too, and would recommend it to anyone interested in the history of autism research or autism support organisations. It's a valuable addition to the field. Thought the author could have gone into more depth regarding why there have been controversies over theories; it's rarely just a case of one party being right and one being wrong, or just of people having different opinions. But perhaps that's for another book. Prompted me into reading Richard Pollack's excellent biography of Bruno Bettelheim. Pollack's book does read more like a novel. It has everything a blockbuster writer could ask for; Vienna between the wars, psychoanalysis, Hitler, concentration camps, immigration, marital infidelity, child abuse and politics. But it's a solidly researched book and I'd recommend it to anyone interested in the history of psychoanalysis and approaches to child development. Bettelheim doesn't come out well from either book. I noticed Adam Feinstein was still trying to tackle the view that parents cause autism, in an Italian publication, less than a decade ago. cb

My gut feel (so to speak) is that this isn't an educational problem at all, but a physiological one. He might do better in a specialised unit, but it's a bit odd that his behaviour suddenly changed at home and has stayed changed at home and school. I know this is a thorny issue, but have you looked at his diet? Some autistic children do appear to be sensitive to gluten and/or casein, for example, or certain food additives. My son's behavior changed quite dramatically for the better (he stopped being lethargic and floppy) when we switched from cows' milk to goats' milk, for example, and he appears to be sensitive to salicylates. He also got unbelievably grumpy when we tried fish oils. Dietary problems don't always show up as gut problems, incidentally, because they can affect other aspects of physiology. Worth working through some of the more likely candidates. cb

Who's pushing it on you? It's a rather outmoded form of therapy, to say the least, and the theory is pretty questionable IMO. cb

Thank you very much for these replies - extremely useful. I'll keep you posted on progress. cb

Our son is 12 and has a diagnosis of autism. He's high functioning with a range of specific learning difficulties. He has been educated at home for the past three years because of the problems he had in his last school and because we couldn't identify a suitable secondary school to aim for. He was on SA+ throughout his school career and both his schools (infant and junior) started gathering evidence to support an application for a statement but the application never materialised in either school for a variety of reasons. Although he's intellectually able, his problems with receptive and expressive speech, spelling, writing, arithmetic plus hyperacusis and mannerisms make it unlikely, in my view, that he could cope with mainstream, so we are looking at specialist independent provision. At our request, his paediatrician has referred him to the tuition service and he will have home tuition for up to 16 weeks as part of a transition back into school. The service want the statutory assessment to run concurrently with that and have suggested that we apply for a statutory assessment as soon as possible. Parent partnership have advised putting in as much supporting information as we can with the application, because they felt this can set the tone for the statutory assessment. I've already prepared a full summary of ds's school experience, learning difficulties, sensory problems etc and have copies of reports ready, although some of them are obviously quite out of date now. I'm fairly familiar with the SENCOP because I've spent the last three years reading about other parents' experiences with school. I just wondered if anyone has any do's and don't's they feel we should know about. Any tips gratefully received! cb

Speech And Language Therapy/ist cb

Can't advise on how to bang certain parties' heads together, bensmum, just to say that as far as education is concerned it is perfectly possible to 'catch up', even as an adult, however much you have missed. You just need the right support. Not much comfort in your situation, I know, just trying to say that not getting the right support at the right time doesn't have to scupper your life chances. cb

They are supposed to, but there appears to be some laxity about whether or not SALTs and EPs are seen as external agencies or not. I've come across several parents reporting that their permission wasn't sought before the EP was consulted, and when they asked about this, they were told the EP was employed by the education department and so didn't count! cb

I think it's important to bear in mind that a diagnosis of AS means that a group of symptoms have been identified, not a specific medical condition with a known cause. Lots of different things might cause AS symptoms. Including whatever causes deja vu. cb

What my son said (he was 8) was "I can predict the future." I asked him what he meant. He said "I see things happening before they happen and then it happens like in my prediction." I thought he was fantasising. After it had happened a few more times, he started to get quite upset about it and was shouting "The same thing keeps happening to me!" in a panicky voice. I asked him to describe exactly what happened and what he described was deja vu.

Asperger Syndrome and ADHD are both medical disorders, so the HT, unless she is a medical practitioner, is not qualified to comment. She might have been making a reference to the weight a diagnosis carries in the education system, of course. The diagnosis by a qualified medic is important because ASDs and ADHD can be caused by chromosome disorders that might have implications for other aspects of the child's health and development. Ideally the diagnosis should be carried out by/with a paediatrician. SALTs and Ed Psychs are not qualified to diagnose, but some areas carry diagnose using a multi-agency team, including the SALT and Ed Psych. cb

My son (12) has been home educated for three years and we are just starting the school placement journey. Because of his 'complex' needs (which, being translated means 'we don't know what to do, rather than the fact that his needs are complex) the inclusion service recommended getting a referral from his paediatrician to the tuition service. This we did. Guy from the tuition service comes to see us, explains what's on offer in terms of ds getting a statutory assessment and transition into school. Doesn't think his centre for pupils with medical problems would be suitable because it's choc-a-bloc with kids from Y10 and Y11 who can't cope with school, and can be a bit 'busy'. It was like stepping into a different world. Suddenly, we realised there's an entire community of school refusers/not copers out there. One of my son's former classmates has been in a similar unit and has thrived. A neighbour told me her son has been in one and loved it and did really well. No problems with attendance there in his case. Probably not at all helpful to you, but just to let you know that there are other options. In our area, these appear to be (understandably) a closely guarded secret and the impression generally given is that school attendance is the only option. cb

Don't want to scare you, but it is associated with seizures. Before you panic, seizures are many and varied and are due to electrical activity in the brain. Many people have some types and don't even notice. My son, at 8, was experiencing deja vu to the point where it was beginning to disorient him. He also reported out-of-body experiences (also associated with seizures), kept getting episodes of uncontrollable shaking, and frequent nocturnal nosebleeds. It was during a time when he was extremely distressed by what was happening at school - he'd had a year of poor support and physical bullying by other children. His symptoms were the last straw for us and we took him out of school. All the symptoms disappeared within a few weeks and haven't returned. Saw the GP who said if he had been having seizures he wouldn't have known anything about them, but that view hasn't been confirmed by what other people have said. Deja vu isn't a symptom of Asperger's because AS itself is a cluster of symptoms. We don't know if those symptoms are the result of a single condition or several different conditions. So, from our experience, I would say yes, your son's deja vu could be due to extreme anxiety, and that it is likely to disappear once he is settled at a new school. But I would advise asking him to let you know when it happens and to keep a diary, which might help with identifying trigger factors. Don't worry about it, but keep an eye on it, basically. cb

Hi hangingon I can't help much in practical terms, I'm afraid, as our son with AS is only 12 and doesn't appear to have a problem with OCD. Just to say that I can appreciate your desperation, and your son's strength of character for coping with this for so long. I would suggest that you focus on the OCD because that, in my view, is likely to cause significantly more problems than the AS. I get the impression that support for people with OCD varies widely across the country. I was once acting as an advocate for a guy with OCD and his psychiatrist referred to it as a 'notoriously intractable' problem. I've since come across people who say 'Oh, there's a range of therapies and treatments available. I got a lot of help from....". I assume you know about OCD-UK www.ocduk.org/. The best place to start to look for support with AS is probably the National Autistic Society. Also, to add that Asperger syndrome, like all autism spectrum disorders, is diagnosed by identifying patterns of behaviour. 'Asperger syndrome' is a label for those behaviours, not a diagnosis of the cause of those behaviours, because we don't know what causes them. Lots of things might. It's possible that everyone with a diagnosis of AS has the same underlying cause, but that is by no means a foregone conclusion. What is likely, in your son's case, is that whatever is causing the OCD is also causing the Asperger's characteristics. The problem with both OCD and AS is that we don't know what causes them, and there is controversy about what causes them, which is why it is not going to be easy to find treatment. The NHS is unlikely to fund treatments that might or might not help. However, there is support available. I hope you can find it. cb

I've been home educating my son (12) for three years now. Initially it was only as a temporary measure until school got sorted out, so we had a schooly sort of day with worksheets etc. He would wriggle out of them whenever he could. It was exhausting and uninspiring for both of us, so after a few months I declared a long holiday to have a think about what to do next. That was when he started learning - asking questions about comic books he was reading, so we found out the answers and it progressed from there. Our timetable is now very like J's mum's. We rely heavily on books from the library around his interests and his knowledge has developed organically. He's got into maths really quickly through the 'Murderous Maths' series - after years of struggling with basic addition to fractions and square roots in a matter of weeks, because he's very interested in the ideas, even if he gets bogged down by the numbers. Basically, you need to take your cue from him and work round his interests, at least to start with. And it could take him a long time to recover from what to him is a bad experience. cb