onlycrazygal

im so sorry your having such a bad time love, i can totally relate to your sons behaviour.....solutions im afraid i havent got a suitcase of , its really hard to explain to people sometimes just how bad it gets and just how desperate we can feel. just an idea, dont let CAMHS fob you off corr their so good at that arnt they, write down what your going through , write down what he do s and says, sit down with them at CAMHS stick to your guns love , be strong and tell them you need support with him..... its not a crime to need help is it, maybe you need to shout a bit louder these people need it sometimes, hugs, <'> paula

Dare i ask you guys to do such a thing for me ???? i think its a wonderful idea!!! what do you think ??? ive been so worried tonight as in my sons doctors report it says on the last page that my sons seperation anxiety and embarrasment about his tics as he has been bullied has made it impossible for con to return to school..... seperation anxiety , thats within the realms of the aspergers diagnosis isnt it ??? so that means if they take him from me they could make very ill , i cannot let that happen he has been through enough trauma ........ i dont want to appear desperate as i know you all have so many problems of your own, but if we could accumulate enough emails and send to gmtv surely to god someone would listen ????? the system is sooo wrong, sometimes maybe when enough people are strong enough in what they believe they can bring about change.........i have to pray that this is the case , god knows ive little else left, just hope! id like to do this, not just for my son but for many others that have fell prey to the system, it has to stop..... hugs, paula

slightly off topic i know but in todays newspaper they plan on giving foster carers proper wages and raising their payments by 50% as theirs a shortage , i know it varies depending on the area however it occured to me that on average a foster carer gets on average 250-300pounds a week for a neurotypical child plus bonuses for a child with asd s it rises quite dramatically to 450-500pounds a week and the government are raising their payments by 50% surely to god this will only serve to entice not only genuine foster carers but also the undesirable kinds of people out of the woodwork whos only interest is the money ....... good god the system is going nuts!!! and unfortunately children like yours and mine , the vunerable in society will suffer as a consequence. im disgusted beyond words, papers are my next stop guys, i may need your help for which il be forever in your debt im sure . but i cannot tackle this alone, id obviously rather go to the big papers than local anyone got any ideas, would appreciate them.... hugs, paula

Thanks daisy proudfoot, yeah im familiar with how the system works, what i must be very careful of is who works for the LA /LEA and who doesnt love, i know parenting partnership for one do , as at the last meeting she tried her hardest to discredit my sons independant consultants report. Not only that but she was part of the corrupt team that put him on the child protection register in the first place.......i just hope the nice little paypacket they all recieved from this triumph was worth it. ive approached my mp by letter firstly (which he promptly sent to the social services im battling with) then by telephone, in which he said at the next meeting i was to sort it out. i asked him how i was ment to sort it out when the ed soc worker had been lying and now was backed by the camhs doc and ss, he simply said paula sort it out you will never be able to care for your son alone you will need them so sort it out. as for NAS i will try them though i have in the past cried out for help and they couldnt offer me much assistance im afraid. thanks for your efforts and thinkin about me its well appreciated , hugs, paula

do s anyone know where i can get an advocate for my son in case the worst happens, ive tried , searching but i cant continue feel so sickj please , do s anyone know of one bin bolton manchester area.... hugs, paula

ive godda keep going guys, its getting so hard, i cant believe these ppl..... do you no what they said at the meeting, they said that even if the independant consultant was correct and con is aspergers and tourettes, my parenting style would be exactly the same as a normal/neuro typical child, their is no difference. their is , i mean my 19yr old was totally different to con, he understood where con doesnt , for god sake who educates these people.???? am i to lose my son all because of their pig ignorance and lack of knoledge of asd s.......crikey!!!! they have reports now from family support worker and parenting partnership that botrh stipulate that my son is a completely different child when hes not with me.....hes happy, a free spirit they say, im stifling him corrrr struth they havent gotr a clue!!!! hugs, paula

HI I phoned oliver cyriax although hes sympathetic he said straight off that he cant help in individual cases..... it was worth a try though guys.... sol has been on phone this morning, suggested i get the train to penarth in wales to sign forms so they can start the judicial review. i cant do it my face is so big , i dont5 feel well.....he said he will send them out today by special delivery , they will get to me tomorrow, then i sign them straight away. he must have them before thursday.....otherwise care proceedings will come into play first and connah will be taken. god i wish i could travel , ive no strength just now i just keep crying im so sorry guysd hugs, paula

hi guys i am so touched by this in tears,...couldnt reply earlier been very poorly, had painful front tooth on saturday that turned into a football face by sat evening , agony isnt the word but ive got tabs now so my son has let me downstairs for ten...... i had been warned by sol previous to the meeting that their aim was that connah gos in care, so i was prepared despite being a bag of nerves, it seems they are persuing an assessment of con in a different enviroment, suggesting fostercarer, i said do your assessment but i cannot agree to him going to a foster carer. i was then told i was not complying , that i should voluntarily sign him over to voluntary care. i said i couldnt do that as i didnt trust the professionals concerned as they are throwing more energy into discrediting me rarther than helping my son. conclusion of the meeting was that i have to work with my social worker and the medical center nurse and must comply with them , the second i dont they start care proceedings and they will move fast. once outside with my sol he said paula they are playing with you , their legal team has already started care proceedings we have been notified. they must be stalling for time as they have to find a suitable placement for him before they can take him....... i dont mind saying at this point im scared , very scared, i know once they have him i will never have him home again. they are now stating we do not show any affection or warmth towards one another .........how can they possibly gage this, ???? a camcorder in my wall to count how many times we cuddle or interact , crystal ball thinking in my view ...... dont worry , i will NEVER GIVE UP , MY SON MEANS EVERYTHING TO ME , NOTHING WILL DETER ME FROM SEEKING THE HELP HE SO RIGHTLY DESERVES..... thank you so much for your support , well needed and appreciated . hugs, paula

hi just an update , looks like im going to the case conference alone on 6th of october as my sol cannot chase down cons sw to verify if they are to take out care proceedings on my son or not. sol said if they do plan to initiate care proceedings then he will send someone down other t5han that he cannot justify sending someone as its through legal aid. hes been making phonecalls to the local authority for 3 days, he rang today and asked me to chase her up, im sure they are doing this on purpose as they know i get anxious, i hate them for this the beep beeps.... hugs, paula

i think your right martyn good on ya!!! the government has a lot to answer for ......read my posts sometime that ll give you an idea of my gripes about so called professionals and the way they get away with murder........count me in hugs, paula

your very welcome love.......glad you found it useful...... <'> paula

My Response to David Cameron's SEN Commisison This article was written by an Action Network user not the BBC Updated: 19 Dec 2005 By Richard Exley, Leeds "Introduction Autism Consultancy Services is a worldwide organisation that was set up in 1990 by Richard Exley, Richard set up his own company as he saw and witnessed firsthand a distinct lack of appropriate and specific services based around Autistic Spectrum Disorder. Throughout this paper there are several references to the approaches and interventions used within Autistic Spectrum Disorder range but that does not mean that either I as Richard Exley and/or Autism Consultancy Services endorses or supports the approaches mentioned. Over the years the remit for Autism Consultancy Services has changed considerably due to demand in the field and also continuing rising opportunities for Richard to be involved in both from a practical, legislative/advisory and supportive model. Primarily but not exclusively Autism Consultancy Services has four arms: I am a licensed trainer (City and Guilds 7407) and Richard has built and developed training packages that he hopes to get accredited in the future. Richard was one of the first people with Asperger�s syndrome in the UK and Europe to talk on and away from his personal experiences and has lectured all over the world including to the Australian parliament in 2002. My work takes me all over the world as I lecturer at different places, schools, colleges, work places, parliaments etc. Until 2003 Richard was also involved with the Distance Learning Courses on autism which are run through the University of Birmingham. What made Richard�s work unique being male is that across the Autistic Spectrum Disorder range it is felt by some colleagues that there more males with a high functioning Autistic Spectrum Disorder hence 9:1 for people with a high functioning autistic disorder and 4:1 for more the classic cases of Autistic Spectrum Disorder and back in 1990 there were very few people with any form of an Autistic Spectrum Disorder on the international circuit namely Temple Grandin (USA), Donna Williams (Australia) and Jerry Newport (USA) and I was one of the first in the UK/Europe to set up a worldwide consultancy service solely for Autistic Spectrum Disorder. I am also a registered carer and currently support over one hundred people with Autistic Spectrum Disorder across the age and ability range including fifty on a regular basis through a befriending scheme and a worldwide supported employment project including using my contacts in the business world, I also run and manage two social groups both link in with other organisations like sexual health clinics, employment agencies/employers, sport clubs, youth clubs and amateur dramatic societies etc. I am also a Named Person for children with Special Educational Needs especially with an interest in those with an Autistic Spectrum Disorder this has now been extended to being an expert witness in tribunals and courts. I also run the world�s only advocacy (self, group citizen etc,) service for people with Autistic Spectrum Disorder which is both online and in person as well as having an active role in ensuring that Autistic Spectrum Disorder is in the public eye of policymakers and legislators including with colleagues in the European Union, United Nations and the World Health Organisation. I am also a Trustee to four charities; I am helping other organisations become charities and companies which are limited by guarantee. For existing charities I act as an advisor on issues such as providing them with the latest research, good practice guidelines from the Charity Commission and Companies House etc as well as helping in key areas such as fundraising where I have helped organise events. I am also a governor for two schools near to where I live. I also sit on a number of working groups representing the Autistic Spectrum Disorder angle either professionally and/or as an advocate/champion for those with Autistic Spectrum Disorder who may find attending/participating at meetings difficult. I am also a regular attendee of the All Party Parliamentary Group on Autism meetings and have been since the inception in February 2000. Finally I am a researcher into Autistic Spectrum Disorder, primarily I look at the day to day issues and how people with Autistic Spectrum Disorder can contribute and participate in a society that still does not recognise or understand the true complexities and extent of Autistic Spectrum Disorder. I am involved with a number of projects including conducting research into a number of things around an Autistic Spectrum Disorder and I have strong/ongoing links with students, universities/colleges, professionals, research scientists etc all over the world. That said I do not wish or have any personal involvement as a participant of any research despite being in regular contact with an increasing number of researchers/scientists well including those linked with the Medical Research Council, the Institute of Psychiatry and the Royal Colleges etc. My current and latest research explored a small group of people with Autistic Spectrum Disorder through a year looking at the issues around �reasonable access� as defined by the Disability Discrimination Act (1995) and the possible places where people with Autistic Spectrum Disorder may go at different times of the year and was diarised each day by each person writing how they got on but looking at stress, triggers and how service providers (large and small) coped with the Autistic Spectrum Disorder and how service providers made reasonable adjustments and access for people with an Autistic Spectrum Disorder as well as exploring the training needs of different service providers.. When I contacted the Chief Executive of the Disability Rights Commission (Bob Niven), the Minister for the Disabled (Anne McGuire) and the All Party Parliamentary Group on Autism with an offer to present them my findings/outcomes I was told �my research is unnecessary, irrelevant and bias� I have written to Tony Blair and David Blunkett as Secretary of State for Work and Pensions and to date I have not had a reply or an acknowledgement, as for David Blunkett I even arranged for my letter to be typed in Braille and offered to send a cassette/CD with the letter dictated. Before I start Autism Consultancy Services believes we need to be more specific a) what a Special Educational Need is and what a disability is. Autism Consultancy Services believes that a Special Educational Need is a barrier to learning. The wide range of strategies employed by the skilled staff in a number of our schools is often insufficient to overcome such barriers. As for a disability Autism Consultancy Services believes this is "a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities� which is shared with the Disability Discrimination Act (1995). That said we must recognise there are different types of disabilities including physical, sensory, developmental, cognitive, psychiatric, and health-related. However Autism Consultancy Services believes that we need to go the extra mile in looking at the a) social understanding which underpins the problems for many people with an Autistic Spectrum Disorder and exploring the sensory needs of the person with an Autistic Spectrum Disorder, sensory being that they are either hypo and/or hyper to the five senses of smell, touch, taste, sight, hearing and hearing but each sense must be seen as an individual sense for example as someone may have good visual skills may have poor auditory skills etc. which are often neglected and ignored particularly when the definition of Autistic Spectrum Disorders and disability through the Disability Discrimination Act (1995). does not address this either. Autism Consultancy Services is unique in that I have spent many years working with colleagues from a variety of disciplines and backgrounds including working with the Royal Institute of British Architects, interior designers and town planners etc. looking at the individual and complex sensory needs of people with Autistic Spectrum Disorder when designing and building new schools and hospitals etc. as well as helping improve existing buildings to cater for those with an Autistic Spectrum Disorder by addressing the issues of flooring, ceilings, lighting, colour schemes etc. The general description for an Autistic Spectrum Disorder are present from birth or very early in development and affect essential human behaviours such as social interaction, the ability to communicate ideas and feelings, imagination, and the development of relationships with others furthermore Autistic Spectrum Disorder is referred to as a spectrum disorder because there are a range of symptoms and characteristics that present themselves in different ways. Within the autistic spectrum there are different subgroups namely Asperger�s syndrome, high functioning autism, Rett Syndrome, Childhood Disintegrative Disorder etc. That said many people who either don�t live and/or work with people with an Autistic Spectrum Disorder understand what social understanding means. Therefore to extend and reinforce my argument I have tried to summarise in that social understanding is, it is a knowledge of social aspects of the human condition, how they have evolved over time, the variations that occur in differing physical environments and cultural settings, and the emerging trends that appear likely to shape the future. As Gray (1994) says �We must approach the "social impairment within an Autistic Spectrum Disorder" as a shared impairment by working to improve social understanding from both sides of the social equation.� A way to address the social understanding deficit is through Social Stories (Gray 1993) � which is a social story is a story written according to specific guidelines to describe a situation in terms of relevant cues and common responses (Gray & Garand, 1993). The underlying philosophy stresses the importance of "abandoning all assumptions" - to seek to understand the person�s perspective, to ensure a student has the social information he/she needs, and to present information so it is accessible and easily understood. As a result, every social story has a reassuring, accepting quality - positively and matter of fact describing a specific event (Gray et. al, 1993; Gray & Jonker et. al., 1994). Experience indicates social stories are often effective with mid to higher functioning students from preschool to adult. 1. (a) Are we properly identifying children with SEN? Following extensive interviews (phone, email, 1:1 etc) with people on the mailing list of Autism Consultancy Services the outcome showed a clear no. Children/young people with an Autistic Spectrum Disorder are not being recognised and/or identified correctly and accurately, where identification does take place it remains ad hoc. There has become a trend for one size fits all through a framework for diagnosis that is twenty-five years old hence based on the Triad of Impairment (Gould and Wing 1979). Wing and Gould acknowledged that there were many children who did not exactly fit Kanner�s description of �early childhood autism but who nevertheless had significant social difficulties. However such framework is misleading in that what constitutes an Autistic Spectrum Disorder varies from person to person and furthermore the framework precludes the sensory differences in that their senses can be either hyper or hypo and each sense is unique and how information is processed is unique as well as being unique for every person, and if you read Kanner�s original paper you would clearly be able to recognise the sensory difficulties for each person. Once again the example I used earlier comes back into play in that someone can have good visual/spatial skills/awareness but yet have very poor auditory skills and as a result their senses become distorted due to the inability of separation. Another child may have fairly good auditory, verbal and visual skills but may have problems in smell and taste in that their food needs to be prepared and cooked a certain way and then eaten in a further way � my Norwegian colleagues Karl Reichelt and Ann Marie Knivsberg have been involved in researching this area for many years and have worked beyond the gluten/casein free diets that many children/young people with an Autistic Spectrum Disorder have undertaken. Another child may have problems differentiating between sweet and sour foods etc. or a child may have problems with hard floors, certain lights, aftershaves/perfumes or unable to block out sunlight and when the clocks go forward/back can have no bearing too even with thick curtains across the window etc. Some people with an Autistic Spectrum Disorder also have irrational fears/phobias like paraskevidekatriaphobia, (fear of Friday 13th) the number eight (including the past tense of the word eat), the washing machine etc. - it could be perceived that people with an Autistic Spectrum Disorder are perceived as being social phobic and/or agoraphobic and become so anxious that they experience panic attacks, which are intense and unexpected bursts of terror accompanied by physical symptoms including self harm and mutilation. Remember that an Autistic Spectrum Disorder is often described as a �hidden or invisible disability� in that is isn�t always noticeable, recognisable or identifiable at first hand but that does not mean it or parts of it don�t exist. Some people with an Autistic Spectrum Disorder become obsessive and repetitive behaviour can intermingle with each other of course these can be separate but sometimes the repetitive behaviour can become an obsession. Obsessions can be things like watching the same video/DVD over and over and over again or collecting pieces of paper, stones, shoelaces, seashells, pictures of animals, logo�s, vehicles, specific characters, hand-flapping, spinning etc. Yet some people with an Autistic Spectrum Disorder may seem unaware of physical pain, heat, or cold and unable to differentiate between boiled water from the kettle and hot water from the tap. As regards pain things like bruises and grazes don�t always appear on the skin until a while later, as for things like scabs they may appear but a child with an Autistic Spectrum Disorder may tend to pick at them until they bleed or release pus and remain unaware of the risk of spreading of germs, infection and contamination and yet may have a fear of needles, furthermore most people with an Autistic Spectrum Disorder have very soft and supple skin. That said even when the subject of germs is being discussed in general or specific terms it has been noted that some children with Autistic Spectrum Disorder can inadvertently develop a form of Obsessive Compulsive Disorder (OCD) including excessive hand washing and can make their hands sore and bleed or develop eczema, dermatitis and other skin problems. All in all there is no one test for Autistic Spectrum Disorder when a child is born (it is also undetectable in the womb) such as testing saliva, urine, blood etc. The Triad of Impairments is based on an assessment of core behaviours, history taking and observation in several settings. Yet the issues that I have just mentioned are often explored after the diagnosis which can vary on where you live in who gives the diagnosis in terms if it is a multi disciplinary team as set out by the National Initiative for Assessment and Screening in Autism (NIASA) report through the National Autism Plan for Children (Baird et al 2003) as many people are using and interpreting the guidelines ad hoc and this is causing unnecessary confusion and anger for many parents etc. Parental information may be supplemented by standardised observational measures such as the Autism Diagnostic Observational Schedule (ADOS; Lord et al., 1999). Various checklists are also available, including: Childhood Autism Disorder Rating Scale (Schopler et al., 1986) Autism Disorder Behaviour Checklist (Krug et al., 1980) An Autism Screening Questionnaire, which is derived from the ADI-R (Berument et al., 1999). Autistic Spectrum Disorder is firmly on the increase and it is not just here in the UK either, as to why this is debated and whether it is better assessment/diagnosis, greater awareness etc is unclear. The numbers are startling, and we need to devote more resources to determining what is going on. The latest estimated figures from the National Autistic Society for children are below: People with learning disabilities (IQ under 70) (Note 1: Almost all of these people will require a high level of support throughout their lives) Children Kanner�s Other Spectrum Disorders 6,700 20,000 Total 26700 People with average or high ability (IQ 70 or above). (Note 2: Many, perhaps most of these people, will become semi or fully independent as adults but need understanding and help as children) Children Asperger�s syndrome Other Spectrum Disorders 48, 100 46,700 Total 94,800 Overall Total 121,500 Below is a table that provides the prevalence rates for Autistic Spectrum Disorder: People with Learning Disabilities (IQ under 70) Approximate Rates per 10,000 Kanner's syndrome 5 Other spectrum disorders 15 Total 20 People with average or high ability (IQ 70 or above) Asperger's syndrome 36 Other spectrum disorders 35 Total 71 Possible total prevalence rate of all autistic spectrum disorders 91 Remember children with Autistic Spectrum Disorder become adults with an Autistic Spectrum Disorder; Figures have been corrected to the nearest 100. There are no sharp boundaries separating 'typical' autism from other autistic disorders, including Asperger�s syndrome. therefore going upon the figures I have just quoted are based upon the 2001 census and could potentially mean about 1:86 has an Autistic Spectrum Disorder and that could mean more people than with a physical disability, learning disability, sensory (blindness, deafness etc) disability and Autistic Spectrum Disorder is found across all races, cultures, creeds and nationalities. 1. ( and doing so early enough? Autism Consultancy Services believes this is clearly not the case. Early intervention is imperative. Early intervention refers to offering an Autistic Spectrum Disorder specific intervention at the earliest age possible. It is about applying a structured approach to the education of children with an Autistic Spectrum Disorder. Children who receive educational intervention before the age of four years have shown to significantly improve their chances of learning new skills and adapting to their environment, when compared with children who begin intervention at a later age. However what makes the argument more problematic is that it still remains comparatively rare for a child to receive a diagnosis of Autistic Spectrum Disorder prior to their fourth birthday even though the signs may be there but undetected or recognised, which can cause a dilemma for parents/carers through early intervention as by the child reaches their fourth birthday a child will have already gained or developed a number of skills and competences. Research indicates that intervention should commence as soon as possible after diagnosis (Clunies-Ross, 1988), that early intervention prevents declines in intellectual development (Guralnick, 1998) and that early intervention leads to improvements in most areas of deficit in autism (Smith, 1999; Birnbauer and Leach, 1993; Jocelyn, Casiro, et al., 1998). One-on-one intensive intervention is the ideal teaching setting for children with an Autistic Spectrum Disorder. The needs and skills of children vary considerably, and no one program/method/approach will fit every child and trying to place a proverbial square peg into a round hole is unadvisable and not recommended as of the long term and adverse damage in most areas of development including adulthood which can lead to problems with anti social behaviour, the prison service/criminal justice system etc. This does not have or necessarily mean an approach such as Applied Behavioural Analysis (ABA) or the Earlybird (Shields, 1999).or Help programmes offered by the National Autistic Society. There are many approaches for Autistic Spectrum Disorder and research shows no one program being more effective than the other as each child must and needs to be seen as an individual throughout their life especially during their education, education is for life for people with an Autistic Spectrum Disorder, as Segar (1997) believes that �Autistic people have to understand scientifically what non-autistic people already understand instinctively." or �the best key to overcoming autism is understanding it� The difficulty and frequent dilemma is what to do and how long to do it as whilst Autistic Spectrum Disorder is not diagnosed prior to two years (except in rare circumstances) but often children are diagnosed anything from four years up. Additionally a lot is happening in or minds and bodies prior to that age and parents and educators could be causing inadvertent problems by going through a process that can be traumatic, emotional and distressing, guilt ridden for all the family problems such as long term mental health and self esteem problems could be impending and it is often a case of the chicken and the egg in which comes first. However with the correct/appropriate help including accurate, ongoing training on Autistic Spectrum Disorder (and not just a one day awareness course either) for all professionals that the child will come into contact with, no matter how small is imperative including professions like secretaries, caretakers, auxiliary personnel etc. Whilst the Children Act encompassed with Every Child Matters (2003) through the autism exemplar talks about multi agency working, a common assessment framework, a common core of skills and knowledge, a workplace reform and professional development. Regrettably these key areas are still not happening in many local authorities due to a number of reasons including trying to agree responsibility of where autism is in whether it is a learning disability or mental health disorder despite people with an Autistic Spectrum Disorder can have one or the other or in some cases both or some authorities see the word guideline and therefore feel it is not applicable to them as an authority. The nervous system of a person with an Autistic Spectrum Disorder does not work in a balanced way and is under stress as it is more sensitive to sight, sounds, movement and touch than the nervous system of a person without an Autistic Spectrum Disorder. The bombardment of sensory information throughout the day means a person with an Autistic Spectrum Disorder is easily overwhelmed and this can result in challenging behaviour at school or after school when the child gets home. Furthermore when people with an Autistic Spectrum Disorder feel stressed, very tired, ill or worried, minor changes can be upsetting to them and cause tearfulness, anger or distress. It can be like this all of time for a person with an Autistic Spectrum Disorder hence their needs for routine and predictability. Challenging behaviours are exacerbated by crowds, heat, noise, fatigue, illness, sensory overload and medication. A person with an Autistic Spectrum Disorder finds other people unpredictable as they can not always understand what is meant or what others expect of them, daily events can be uncertain and unpredictable. Change is difficult as the pragmatic use of memory experiences are compromised which makes it difficult to be adaptable and to anticipate what will happen. Challenging behaviour is those children who display behaviour of such intensity or frequency or duration that the physical safety of the child or those nearby is put at risk. That said �difficult or challenging behaviour is not a part of an Autistic Spectrum Disorder, but it is a common reaction of pupils with these disorders, faced with a confusing world and with limited abilities to communicate their frustrations or control other people�. (Jordan and Jones 1998). In all the literature I have read, the words �challenging behaviour� and �communication� difficulties seem to run together (Clements and Zarkowska 2000, Cumine et al 2000, Howlin 1998, Jordan and Powell 1999, O�Brien 1998, Smith Myles and Simpson 1998, Waterhouse 2000,). Whether it is an inability to process the verbal and non-verbal information given or an inability on the individual�s part with an Autistic Spectrum Disorder to verbalise their needs or frustrations, both play an important part in the resulting challenging behaviour displayed. Before being able to address challenging behaviour there is a need to identify and observe behaviour patterns taking note of specific details and behaviours when they occur, how often they occur, what level of communication is adopted and the resulting outcome i.e. the challenging behaviour displayed and how it is dealt with. Different methods of recording observations include ABC�Antecedent, Behaviour Consequence (Cumine et al 2000) STAR�Settings, Triggers, Actions, Results (Zarkowska and Clements 1994) TOAD�Talking out of turn, Out of seat behaviour, Attention seeking ,Disruptive behaviour (Wragg 1994. cited O�Brien 1998). Observation encourages the observer to be analytical and reflective about everything they do, how they do it and note everything they say and how they say it, the manner of their voice, the words used (O�Brien 1998). Whichever method of recording is used, the outcome of the resulting analysis should lead to implementation of appropriate strategies to help with the individuals challenging behaviour. There is a need to ensure carers and professionals are consistent in giving simple and concise instructions, in most cases using the child�s name so they are aware the instructions include them. Metaphors, colloquialisms and slang are difficult for the child with an Autistic Spectrum Disorder to understand. In some displays of challenging behaviour the individual with Autistic Spectrum Disorder can resort to shouting, screaming, hitting, pinching or kicking. It is important that staff work together and is consistent with the language they use to address any outburst of challenging behaviour within the classroom, including normal verbal and non-verbal language. Social stories, Social Scripts and SOCCSS�Situation, Options, Consequences, Choices, Strategies, Simulation (Smith Myles and Simpson 1998) have been proven to help with social interaction of children with an Autistic Spectrum Disorder. All of these depend on having adults structure their behaviour through stories, pictures or role play and using effective communication skills verbal or non-verbal to improve what was a difficult situation/concept for the child to understand. The repetition of the stories and the sameness being of paramount importance to the child. Once a difficult situation has been identified, social stories can be developed to explain and show the child how to behave next time to attempt to alleviate the challenging behaviour displayed. It is important that the stories are not presented when the challenging behaviour is occurring. The child needs to be reminded of the situation at calm moments of the day (Attwood 1998, Clements and Zarkowska 2000, Gray 1995 cited Howlin 1998). For the child with an Autistic Spectrum Disorder a failure to develop the in-built mechanism, apparent in most children, of communication in general and verbal language results in an inability to function as well as others. It may present itself as a complete failure to learn to speak or use gestures or alternatively as an acquisition of words or gestures/signs but not used in a communicative way. For some children this can lead to displays of what others may see as challenging behaviour (Clements and Zarkowska 2000). Although some children with Autistic Spectrum Disorder are non-verbal, this does not mean they are non-communicative. Communication for a child with autism may present itself in many different ways. Many attempts to communicate may be construed as behavioural problems and may not always be socially acceptable and what they are attempting to communicate may prove difficult to determine. The introduction of the Picture Exchange Communication System or the Treatment and Education of Autistic and related Communication Handicapped Children programme for a non-verbal or verbal child with an Autistic Spectrum Disorder can assist communication and help alleviate some of the possible frustrations associated with challenging behaviour (Clements and Zarkowska 2000, Cumine at al 2000, Jordan and Jones1999, Jordan and Powell 1998, Powell and Jordan 1997,). The Picture Exchange Communication System provides a tool for early communication by offering an opportunity to quickly develop �real spontaneous communication� (Cumine et al 2000, Jordan and Jones 1999).and the Treatment and Education of Autistic and related Communication Handicapped Children programme helps to introduce routine and stability to what can be, for many children with an Autistic Spectrum Disorder with hyper sense sensitivity, a very confusing and over stimulating classroom situation (Cumine et al 2000). It sets out to provide visual information, structure and predictability. Children/young people with a high functioning Autistic Spectrum Disorder or Asperger�s syndrome (which are not the same condition as felt by the members on the Autism Consultancy Services database) often have average or above average intelligence based on IQ and this is causing a whole range of problems across all areas of society from education, health, welfare support and financial support/assistance (through the Department for Work and Pensions and the Benefits Agency) often such people may have good intelligence but still lack, appreciate and understand their own and other people�s usage of skills/concepts in that they are very literal, have little appreciation of abstract concepts etc. For example children with an Autistic Spectrum Disorder can have little sense of danger, self help skills � cooking, cleaning, understanding the concept of money, differentiating between hot and cold, unable to feel/describe when in pain generalisation, problem solving, planning, executive functioning including skills, transferring from one situation to another (including theory into practice) and due to the impairment in imagination as described by Wing a child with an Autistic Spectrum Disorder may get confused when something like the school hall that can be used for PE and also for eating his lunch etc. Play for children with an Autistic Spectrum Disorder is also impaired as well as being a crucial area of development; play is a diverse and complex behaviour that is viewed as central to the normal development of children (Jordan and Libby, 1997). However, it is very difficult to come to a concise definition of what is meant by play. Dictionaries vary in the definitions they offer, most, however, seem to imply some kind of fun, a way of entertaining oneself. Garvey (1977) expands on this, listing play as having the following characteristics: Below are two short lists that lists some of the strengths and weaknesses and neither list is meant to be exhaustive. Play is pleasurable and enjoyable. Play has no goal imposed on it from the outside. Play is spontaneous and voluntary. Play involves some active engagement on the part of the player. Play has certain systematic relations to what is not play. It can be contrasted to non-play. A child's play goes through a number of developmental stages (Boucher, 1999): Sensory motor play Exploratory and manipulative play Physical play including rough and tumble Social play Pretend (make-believe) play. It is sometimes suggested that there are two types of pretend play. So, for example, Libby et al (1998) differentiates functional play (e.g. pushing a toy car along the carpet and making a brmmmm noise) from symbolic play, which involves treating an object or situation as if it is something else (e.g. pretending a banana is a telephone). In Libby et al study, children with an Autistic Spectrum Disorder did not demonstrate significantly less functional play than children with Down syndrome or young children with typical development. Children with an Autistic Spectrum Disorder did however, have difficulties in the production of symbolic play although there was evidence of some capacity to engage in symbolic play, albeit mainly object substitution. Not all researchers make the distinction between symbolic and functional play. A child with an Autistic Spectrum Disorder will rarely be perceived as the playing child (Beyer and Gammeltoft, 2000) and their play can be impaired at all developmental stages. Most research, however, has concentrated on pretence, especially symbolic play. Research has shown that for young children with an Autistic Spectrum Disorder, sensory motor play dominates beyond the verbal mental age, at which it normally declines in infants without an Autistic Spectrum Disorder (Jordan and Libby, 1997). Further, having missed out the early experiences of manipulation and combination enjoyed by children without an Autistic Spectrum Disorder, toys and objects are used in an inflexible way. For example, a child with an Autistic Spectrum Disorder may be preoccupied with spinning the wheels on a toy car, rather than playing a racing or driving game. Roeyers and van Berckelaer-Onnes (1994) describe children with an Autistic Spectrum Disorder as missing the curiosity of typically developing children. Roeyers and van Berckelaer-Onnes concluded that children with an Autistic Spectrum Disorder play behaviour is often limited to simple manipulation, the quality of their play is lower than that of non-autistic children of comparable mental age and (spontaneous) symbolic play is usually absent or impaired. Some children with an Autistic Spectrum Disorder do not give any indication that they want to play with other children, preferring to play by themselves; other children would like to but they can have great difficulty in indicating this wish. All have difficulty in getting the other children to play with them. Jarrold, Boucher and Smith (1996) found that not only are children with an Autistic Spectrum Disorder impaired in their production of spontaneous pretend play, but that they also spend significantly less of their time compared with controls in functional play (e.g. making a doll walk). They argue that the finding that children with an Autistic Spectrum Disorder show impaired levels of functional play is a problem for Leslie's metarepresentational account (Leslie, 1987) because functional play does not require metarepresentational abilities, but is nevertheless impaired. Similarly, Williams, Reddy and Costell (2001) found that in contrast to matched controls (children with Down syndrome and typically developing children), children with an Autistic Spectrum Disorder did not normally engage in elaborate functional play (e.g. stirring a spoon in a pot). Instead their play consisted of simple functional play (e.g. placing a spoon in a pot but not stirring it). The control groups divided their time equally between these two types of play. Children with an Autistic Spectrum Disorder also produced fewer different acts and spent less of their play time in functional play that was new, when compared with the control groups. In summary the play of children with an Autistic Spectrum Disorder can, therefore, be seen as impoverished. As Sherratt (1999) postulates, the difficulty that children with an Autistic Spectrum Disorder experience in pretend play arises from difficulties they have in both the fluid organisation of thought processes and in communicating these thoughts to others. Further, disturbance of play in a child with an Autistic Spectrum Disorder may lead directly to disturbance in all aspects of development (Jordan and Libby, 1997) although it could be that an inflexibility of thought processes causes an impairment in play and also an impaired development of other skills (Sherratt, 2001a). Sherratt and Peter (2002) suggest that teaching children with an Autistic Spectrum Disorder to play may increase a fluidity of thought and reduce conceptual fragmentation. In particular, if play is taught to young children it may assist them in reducing repetitive and rigid behavioural patterns and encourage communication development. It is also a good idea to recognise in line with current educational psychological research that children with an Autistic Spectrum Disorder will benefit from formal training in �executive functional skills� i.e. specific skills like thinking and remembering effectively and basic skills such as sequencing events and understanding timetables. That said it has not been determined what exactly constitutes executive functions it could include: Working memory (holding information in mind while doing something else, and then being able to act upon that information) Organisation (categorisation, management of items in space and time) Planning (foresight) Prospective memory (remembering to remember) Follow-through (remembering to do) Arousal (control of mood, focus and energy) Activation (getting started) Sustaining alertness and effort Behavioural inhibition (stopping oneself before or during an activity) Prioritising Problem-solving Inhibiting verbal and non-verbal responding Cognitive flexibility (assessing options, dealing with ambiguity, shifting perspectives) Quickly retrieving and analyzing information Sequencing (thinking sequential steps through) Strategic thinking Self monitoring (being aware of one�s thoughts, feelings and behaviour, and the impact of that behaviour on others) Subsequently those who have problems in executive functioning likely have problems in important areas of life functioning includes: Getting started on boring and mundane tasks (procrastinating) Remember what one has to do (out of sight and mind) Underestimating time to complete tasks. Awareness of time, and passage of time Handling frustrating situations Offending others by being unaware of socially appropriate behaviour in given context Frustrating others by interrupting, taking over, completing sentences, and being impatient Handling negative emotions (acting on emotions like anger, when calming down is more beneficial) Being attentive in boring or slow moving situations) Thinking through the potential consequences of actions before acting Remembering Completing long-term projects Finishing the last parts of a project, which are tedious and relatively unrewarding Jumping into new exciting, creative activities which are not well thought out Variable motivation For a number of people with an Autistic Spectrum Disorder and their families/carers the lists above will be identifiable as people with an Autistic Spectrum Disorder have significant problems and differences within executive functioning. The frontal and prefrontal regions of the brain are most involved in behavioural inhibition other executive functions. It is the outer surface of the front of the brain, behind the forehead and eyes. There is typically lower metabolic activity and regional cerebral blood flow in this area when someone is showing problems with executive functioning. Strengths often seen in Autistic Spectrum Disorder Construction tasks e.g. puzzles Rote memory � good at remembering things that other people have forgotten Adherence to activity routines Ability to process visual displays Splinter skills e.g. artistic or musical talent. Honest Determined Aware of sounds that others cannot hear Kind Forthright A loner (and happy to be so) A perfectionist A reliable friend Observant of details that others might not see Humorous in a unique way Liked by adults Weaknesses seen in Autistic Spectrum Disorder: Understanding intention of others. Knowledge of social convention and interpersonal interactions. Ability to express emotions in conventional manner. Overwhelmed by sensory stimulation. Difficulty with change. Making mistakes Making friends Taking advice Managing their anger Handwriting Avoiding being teased Tolerating specific sounds Explaining thoughts through speech Coping with surprises All in all Autism Consultancy Services is not against inclusion and integration � but we believe it needs to be done correctly over time, reviewed and methodically as one size does not fit all, children and young people with an Autistic Spectrum Disorder have very specific/individual, profound, complex and varied needs and when doing your washing you wouldn�t place your colours within your whites and therefore children/young people with an Autistic Spectrum Disorder need specialist environments that are unique to the individual. Furthermore as a result of the lack of joined up thinking and planning and the continued ignorance and arrogance towards Autistic Spectrum Disorder including false perceptions that an Autistic Spectrum Disorder is a psychiatric, mental health or personality disorder, it can only affect children, children who may withdraw into a world of their own and all people with an Autistic Spectrum Disorder are extraordinarily talented/gifted in music, science, arts, maths etc. Parents are using the legal system more and more through the courts, tribunals and other hearings against professionals and the local authorities and being scrutinised unnecessarily for conditions such as Munchausen�s Syndrome by Proxy. Munchausen�s Syndrome by Proxy "is a condition manifest by persons feigning or inducing illness in themselves for no other apparent gain than adopting the sick role and thus exposing themselves to painful and sometimes damaging and disfiguring medical procedure. The perpetrator is often a parent and typically the mother. However, there have been cases where the father acts as perpetrator. Perpetrators show an avid interest for hospital care and usually have experience in the medical field; Munchausen�s syndrome is present in 10% of such perpetrators. Munchausen�s Syndrome by Proxy is a sort of enigma - which brings me to my original purpose; a quest for the truth about Munchausen�s Syndrome by Proxy. The most important question for me being: what causes Munchausen�s Syndrome by Proxy? It is a disturbing disorder, which is closely tied to behaviour and, on the surface, loosely connected to the brain. No concrete psychological or neurological data exists on the causes of child abuse. Most theories on the causes of child abuse point to past abuse, family dysfunction and depression - the same symptoms existing in Munchausen�s Syndrome by Proxy perpetrators. However, it seems far too simple to write off Munchausen�s Syndrome by Proxy as child abuse and ignore the psychological components of the syndrome, such as the perpetrator assuming the role of a sick individual by proxy. Information on Munchausen�s Syndrome by Proxy is unanimous on several basic points: the identification, symptoms of the perpetrator and consensus (more or less) that is at least, a form of child abuse. The vast black hole of diagnosis, treatment for the perpetrator and victim and concrete warning signs poses a great risk to the victims. The perpetrators are not overtly inadequate caretakers, but in fact the very opposite. Furthermore, coupled with their ability to deceive and lie to obtain their desired ends creates difficulty in diagnosing Munchausen�s Syndrome by Proxy for doctors. The perpetrator is most likely deeply caught in their psychological, internal experience, while the child suffers through physical, external experience. 1 © Do we need categorisation of disability? The fact is yes we do the sooner the better. A person with an Autistic Spectrum Disorder can have normal or above normal intelligence, but have serious deficits in the areas of communication and social interaction. Testing of cognitive abilities is difficult in light of the communication and social impairments. There can be tremendous differences among people with an Autistic Spectrum Disorder. Furthermore once again when we do our washing we don�t put our colours in with our whites and vice versa as we have little or no idea on how things might come out and we can�t afford to take a chance in case the damage is irreversible or irreparable. The measured intelligence of individuals with this disorder ranges from "IQs" of less than 70 to more than 130. Those who carry a diagnosis of an Autistic Spectrum Disorder, but not mental retardation, can still experience significant learning problems and will benefit from accommodations in the classroom or in testing situations. Neurological research is just beginning to document the exact nature of an Autistic Spectrum Disorder. Certain cell groups in the brains of children and young people with an Autistic Spectrum Disorder are abnormal in size or proportion, causing problems in sensory perception and linking information from the various parts of the nervous system. Children and young people with an Autistic Spectrum Disorder may not see the "big picture," or recognize all of the cues in their environment. Some studies have shown that children with an Autistic Spectrum Disorder process auditory information and respond to visual stimulation at different rates. For such learners, their environment appears like a motion picture with the sound track running at the wrong speed. The most difficult problems deal with the child�s inability to recognize and respond to the behaviour and communication of others. There are several educational model programs designed for children with an Autistic Spectrum Disorder, e.g. Picture Exchange Communication System), Higashi, Applied Behavioural Analysis), SPELL, (Structure, Positive, Empathetic, Low Links), Auditory Integration Training and Sensory Integration Therapy etc. each of which may be tailored to the needs of the child. One example is the Treatment and Education of Autistic and Related Communication Handicapped Children. The Treatment and Education of Autistic and Related Communication Handicapped Children program which offers structured teaching in a centre-based and community-based setting. The Treatment and Education of Autistic and Related Communication Handicapped Children Model, like many other programs designed for students with an Autistic Spectrum Disorder, utilizes clearly defined work areas, visual schedules to provide organization, and visual prompts to sequence steps in a task. There are other treatment options and programs available to individuals with an Autistic Spectrum Disorder, medical and dietary interventions are discussed elsewhere. It is important to remember that no one option or program will fully educate children with an Autistic Spectrum Disorder. Intervention must be based on the strengths and challenges of each individual and it should combine selected components from a variety of intervention models. What makes understanding an Autistic Spectrum Disorder so difficult, and consequently and Autistic Spectrum Disorder research and practice so compelling, is the wide-ranging complexity of the disorder. Autistic Spectrum Disorder practices will need to be considered under a holistic approach. Everyone with Autistic Spectrum Disorder is different and unique and will undoubtedly change as one ages and is exposed to ever-changing biological and environmental influences. In addition, the classical psychological diagnosis of an Autistic Spectrum Disorder is a description of associated behaviours, which though quite useful may hide the fact that several different causes could have an outwardly similar manifestation of symptoms. An Autistic Spectrum Disorder is also unique in that the related research also exists on spectrum, from �basic� (medical and biological) science to �applied� (behavioural, communication, educational, etc.) science and everything in between. It could be argued that the educational needs of children with Statements of Special Educational Needs are laid out in Section two of the Statement of Special Educational Needs and are therefore known to the Local Education Authorities and Autism Consultancy Services argues that the Statement of Special Educational Needs is drawn up by the Local Educational Authorities from evidence submitted and is selective. This view is borne out of the fact the bulk of the ongoing work that Autism Consultancy Services provides is trying to get the Statement of Special Educational Needs correct from the child�s point of view via the parental submission to the statements and the parent�s unique and invaluable knowledge of their own child. This localised position is backed up by the increasing numbers of parents nationwide who are compelled to take their Local Educational Authority to the Special Educational Needs Tribunal (which back in 2000 was around 18% of the 2100 or so cases per annum are being brought by parents of children/young people with an Autistic Spectrum Disorder). Furthermore it is also evident there are issues around inclusion which do not seem to find a place on statements, for example there is a reluctance on the Local Education Authorities part to address in detail problems around transport, the detailed specification of speech and language therapy or occupational therapy in section 3b of the statement (on the basis they are health matters) and such matters for the child at unstructured times. Many children/young people with a diagnosis of high functioning Autistic Spectrum Disorder and/or Asperger�s syndrome miss out significantly due to their intelligence being average or above average and when their prognosis is presumed better and will achieve. Whilst this is true it is imperative to recognise that just because someone appears more articulate doesn�t necessarily mean they are in that some children with a high functioning diagnosis will become like Jekyll and Hyde in that they will hide and conceal their problems at school but at home will become distressed which often has a bearing on the whole family including the child�s siblings and even extended family. People with a high functioning Autistic Spectrum Disorder usually have fewer problems with language than those with a classic Autistic Spectrum Disorder, often speaking fluently, though their words can sometimes sound formal or stilted. Once again problems such as planning, transferring skills from one situation to another (including theory into practice) appreciating another�s needs and views, have stereotyped behaviour, unable to separate fact from fiction and vice versa, a co-morbid diagnosis such as Attention Deficit (Hyperactivity) Disorder or that they have macrocephelus (a larger than normal head size), or epilepsy etc. Additionally many children/young people with a high functioning Autistic Spectrum Disorder will be left out in team games both through the National Curriculum and break time and left out once more when they reach adolescence when peers start to take an interest in sexual/relationship related matters and as some people with a high functioning Autistic Spectrum Disorder are aware of their difficulties it has been noted that some contemplate suicide or self harm. It needs to be noted that approximately 20%-30% of children/ young people with an Autistic Spectrum Disorder have epilepsy which is particularly prone around adolescence and puberty. Furthermore it is unknown how many people with Autistic Spectrum Disorder also have AD(H)D as a dual diagnosis including diagnoses like Down syndrome or Scotopic Sensitivity Syndrome, Landau Kleffner Syndrome, irritable bowel syndrome, Prader-Willi Syndrome. People with an Autistic Spectrum Disorder do not have a personality disorder such as manic depression, schizophrenia and linking the two together is unnecessary and a dangerous combination in terms of assessment and management. Regarding adolescence this is a crucial area for all those with an Autistic Spectrum Disorder as within everyone else in society it is a time that shapes and makes us who we are in our adult years. Whilst people with an Autistic Spectrum Disorder go through the physical signs of puberty at a normal age the difficulties become most apparent in from my own research some children have shaved off their pubic hair due to the fear of change, also get obsessed about germs and self cleansing and if they see a bit of dirt on them or something else such as food they panic including under things like finger/toe nails etc. The subject of Personal Social Health Education needs to be taught in a careful, sensitive and diplomatic way including when addressing the issue of sex as in my experience most people with an Autistic Spectrum Disorder will either be more familiar with slang terms or the correct names for parts of the body etc. but very rarely understand both and this in itself can cause confusion. To the same token some people with an Autistic Spectrum Disorder may refuse to have a shower with their peers after a games lesson, the issues around relationships also are a problem and discovering sexual organs and their sex drive can all pose a problem as many people with a high functioning Autistic Spectrum Disorder and Asperger�s syndrome want a relationship but have very little clue how to go about it, how to sustain and maintain it especially the social side from the school disco, to going out and as a result can be open to victimisation and abuse (including sexual) , this period of uncertainty within our minds and bodies can carry on and in my research carries on at least until the person reaches their early � mid twenties. Since the introduction of the internet many people with an Autistic Spectrum Disorder may go into chat rooms and be unable to pick up, note and recognise innuendos and see people they talk to in chat rooms as their friends especially those they haven�t met in person, when I have broached the subject of paedophilia etc. with some of my young people I am often ignored as for example comments come out �it won�t happen to me�. Going back to the social side a number of people with an Autistic Spectrum Disorder want friends but often on their terms and where they can talk about their thing which is OK after a while but may become tedious and too much for the listener and the child with an Autistic Spectrum Disorder might not pick up on the social cues even the obvious such as yawning and walking away. The biggest problem for a number of people (including adults) with an Autistic Spectrum Disorder is that to the naked eye is that they look normal and may sound normal for a while and it is only when you engage the problems start to become apparent and noticeable. To some people this could be fascinating and intriguing when the young person could be seen as freaky or as a little professor or mildly eccentric but this could be problematic as much as it is complimentary when coming into contact with people like the police, the criminal justice system which is a very, very big issue and needs addressing properly � all in all what is cute at six might not be cute at sixteen. 1 (d) Rise in the number of pupils with non-statemented Special Needs � Causes and potential cures. There is a number of reasons of why pupils with non statemented special needs is rising is because the criteria for obtaining a statement of Special Educational Needs has become ad hoc in terms of where you live as different Local Education Authorities have different criteria or may be bending the rule or if the LEA feels the child does not have specific needs. In my conversations with people on my mailing list it has also become apparent that the moment parents/carers mention a diagnosis along the autistic spectrum the Local Education Authorities clamps up and either refuses any additional help whatsoever or even questions the diagnosis. The biggest factor for the causes is that money and resources (existing resources) can and should be made available � hence failing to look and appreciate the individual, putting all the eggs into one basket, or in some cases putting your colours in your whites and will have no real idea what you will get until you open the door of the washing machine. Whilst Autism Consultancy Services recognises and appreciates we are all governed by time, money and resources but placing square pegs into round holes is not an answer for short, medium or long term. Due to most Local Education Authorities, schools and teaching staff and the lack of accurate, regular and consistent training they have little or no understanding of what Autistic Spectrum Disorder is all about. Over the last years and since schools have been given funds through devolvement to schools each school has a different idea on how the funds can be spent. Regrettably I have seen many schools that place the money aligned for Special Educational Needs has been mixed with other funds and a variety of things have been purchased for example sports facilities, a new member of staff that has no direct contact with the children with Special Educational Needs, a new computer system and so on. The biggest problem is continuity and consistency within local authorities and I have noticed a difference since devolving of funds is that what a child may get in a primary school may not be carried through to secondary school particularly since the decision was made to reduce the numbers of Statements of Special Educational Needs. In the rare cases where Statements of Special Educational Needs are issued they are not maintained or updated with new information, advice, and evidence or through the Individual Education Plans either with the school or the Local Education Authority. What makes Autistic Spectrum Disorder unique is that just because a child appears to have grasped/understood a concept does not necessarily mean they have, for example if someone asked a child if they wanted a drink of orange or pineapple juice the child may say either the first or last thing that they heard unaware of what was being asked and may repeat through echolalia and this is not specific to choice and decision making it can also extend to when the child has an assignment on comprehension in that they may be able to read well but as to understand and then take things out other than what someone has written and quote them directly either in written and/or verbal contexts. It has also been noted that children with an Autistic Spectrum Disorder will impersonate characters from films, cartoons in every sense by saying things the character says and dressing up like the character and then in every setting. A successful Individual Education Plan needs to ask the following questions: � Reviews the plan � Checks whether the things in it are happening � Looks for ways to make sure that those that aren�t happening do get done � Agrees who will do what and by when � Identifies how people will know if the plan is no longer working and needs a further review Once the following has been answered we then need to look at the following model: Essentials (or non-negotiable) � Things that must happen if the person is to achieve their lifestyle and maintain their well-being. Important (or strong preferences) � Things that will make a significant difference and without which life may be tolerable but little more. Pleasures (or highly desirable) � Things that the person would like to have (or not have) in their life to make it more pleasurable and satisfying. The answer to this is to restore Statements of Special Educational Needs and have an independent body that is responsible to parliament but not just the Department for Education and Skills; it needs to encompass other departments such as the Department of Health. When it comes to parents and carers applying for benefits such as Disability Living Allowance, Incapacity Benefit, Mobility cars that when a decision must be based on the diagnosis and not on something like IQ or other tests that look at intelligence. If we continue the downward spiral of removing and/or reducing the number of Statements of Special Educational Needs how are we going to assess the needs of the child and ensure that guidelines that have been drawn up are followed and adhered too. It is well documented that parents and carers of all children who have a disability have to fight and struggle for everything and just because their child turns eighteen do not mean the problems go away or disappear including that Autistic Spectrum Disorder is a disorder that only affects children. It is a problem that needs addressing that when a child becomes eighteen parents have an additional struggle with local authorities in whether their son/daughter will come under the learning disability or mental health services as well as keeping and securing funding for the rest of that person�s life including long after our parents have become unable to care or passed away. When we become parents we have no handbook and when we have a child with a disability everything that we have been taught from our parents and done with other children with a disability we often learn as we go along and need support from friends, family and professionals and not to be put down, condemned, to be disbelieved or patronised. Having a child with a disability such as an Autistic Spectrum Disorder is harder than most due to the complexities, variability and the child can show furthermore there are many contradictions within an Autistic Spectrum Disorder in that people with an Autistic Spectrum Disorder can do some things but not others. Once again there is a myth that all people with an Autistic Spectrum Disorder are talented in areas such as maths, art, music etc but the actual figure of people with an Autistic Spectrum Disorder who are exceptionally talented is 1% of all people with an Autistic Spectrum Disorder. Personally I believe a talent is only a talent if it is useful for the individual and whilst it can

ive had to put in a complaint about a camhs doctor, he ignored material evidence that would have pointed out to him that my son was aspergers, but instead he made a damning report about my parenting and it re-enforced everyones belief that i was fabricating my sons problems.......we have been through hell.......camhs really are awful. hugs, paula

thanks for putting this post up oracle, i will spread this around, i will get some support for my son if it kills me....their are so many families at crisis point but as soon as this is noted instead of helping the situation the powers that be apply more pressure and in many circumstances blame the parents..... im sick of hearing about the abominable state of childrens services, and tired of hearing the phrase lack of resources, this may be all well and good but in the meantime our children suffer. im also so annoyed that authorities seem to think because a child is aspergers that they arnt severe enough to warrant any support from the LA s , im sorry but my blood boils... hugs, paula

cant wait.......should be interesting!!!!!!

yes oracle , im a member , thank you very much anyway..... appreciated <'> hugs, paula

guys, thanks so very much for your kind words, this will be a battle and a half so having to prepare myself.......its amazing the lengths the LEA s will go to , to save money. the only constructive thing i can do with this is WARN everyone, I CARE, an il be damned if this is going to happen to others...... LEA s will influence others, influence doctors, influence staff in schools, have words with the ss, please please heed my warning, im not the exeption to the rule you know im not their are others fighting very similar battles..... they prey on the vunerable in society it is so very sad but very true too....be careful and always act with an air of caution. i never thought i would get to the point where i have had to sit down and actually think about losing my son, but last night it hit me like a brick, worst of it was that i was looking at a photo of him when he was a baby, with his chubby cheeks and saggy nappy i just crumbled in a heap, i cannot imagine life without my son it will kill me .......i have to beat this corrupt multi disaplinary team, because what they dont realise is that it would cause extensive psychological damage to my son to be torn away from his mum, i cant let that happen, i wont let that happen...... hugs, paula

hi all, hope some of you remember me ? fms single mum, aspie , tourettes son ??? well it would seem last thursday was ment to be the judicial review but it didnt quite turn out that way.....according to the barrister cons doctors report isnt strong enough for the court arena they also need to send for gp records to support his findings. (as you may know the LA doctor said he was fine nothing wrong with him) in the meantime i must prove to the LEA that con is recieving adequate education at home, if not ive been told i will serve a prison sentence. then solicitor tells me when i go to the case conference review on the 6th of october the Social services will start care proceedings.....it was just confirmed today from the social worker , im devastated beyond words, i havent done anything wrong!!!!!! i was set up to fail guys, hugs, paula

thanks smiley , thats really nice of you ...... big hugs, <'> paula

hi all, just letting you know after all the fighting i have done i finally was granted legal aid and i catch the train to london on thursday meeting my barrister and solicitor at 10.00am hope some of you remember me as i dont get to come on here often...... the local council will be so very sorry for all they have done to us and my son WILL get the help he so rightly deserves, hugs, paula

theres a march on in manchester on the 25th of sept, apparently theirs a labour conference, a lot of parents will be there, as it appears in this country the social services and other professionals would rather place children with complex needs into care rather than put services in place to support the child and family. i know some of these parents personally and it has been very fortunate for me to gain insight and knoledge from these people otherwise my son would be in care now. now im not saying that this happens everywhere but it happens often enough for their to be very real and grave concerns right across the country......60% of parents that ask for support for their child and themselves get caught up in child protection matters, sometimes losing their children on a PROBABILITY, of abuse in the future, it would seem these ss workers have crystal balls too....... the reason for social workers to want so many children in care is because MR blair has set adoption targets for each local authority at 40%......as this is of financial gain to the government and the L A s now you may choose to ignore this, that is your porogative, this may be struck off forum i really dont know, the government needs to wake up and professionals need to be accountable in the family courts, rather than have this immunity to the damage they do to families and the very many lies they tell in the name of being in the childs best interest......autistic children are one of many catagories that the ss target. if you would like to know more leave me a message, if not then please take 2 minutes to browse the www. fassit.co.uk site. then at least you know the facts of what the government are doing to the children of this country........ thank you very much for your time, .......how many children go without adequate support, how many parents will be driven to suicide or similar, the support is appallingly lacking. we need to speak up now......... hugs, paula

Government Investigation Finds Autism Vaccine Related by Evelyn Pringle http://www.opednews.com According to the most recent CDC estimates, one in 166 children in the US suffers from an autistic disorder. Twenty years ago, autism only affected one in 10,000 children. For years now, studies have shown that exposure to mercury in childhood vaccines, not only causes autism but can also result in immune, sensory, neurological, motor, and behavioral dysfunctions similar to traits associated with autism. On May 21, 2003, after a three year investigation, "The Mercury in Medicine Report" was released by the House Committee on Government Reform, and stated in part: "Thimerosal used as a preservative in vaccines is directly related to the autism epidemic. This epidemic in all probability may have been prevented or curtailed had the FDA not been asleep at the switch regarding a lack of safety data regarding injected thimerosal and the sharper eyes of infant exposure to this known neurotoxin. The public health agencies' failure to act is indicative of institutional malfeasance for self protection and misplaced protectionism of the pharmaceutical industry." The Congressional report also said that the CDC, due to its "biases against theories regarding vaccine-induced autism," had chosen to fund researchers "who also worked for vaccine manufacturers to conduct population-based immunologic studies. . ." and stated: "The CDC in general and the National Immunization Program are particularly conflicted in their duty to monitor the safety of vaccines, while also charged with the responsibility of purchasing vaccines for resale as well as promoting increased immunization rates." The autism epidemic cannot be denied. On February 15, 2005, the GAO, released a Report titled, "Special Education Children With Autism," that revealed the number of children ages 6 through 21 diagnosed with autism receiving special education services has increased more than 500% over the past 10 years. In a transcript, obtained under the FOIA, of a secret meeting attended by officials from the FDA and CDC in 2000, Pediatrician Bill Weil, acknowledged the epidemic and stated, "There are just a host of neurodevelopmental data that would suggest that we've got a serious problem.... The number of kids getting help in special education is growing nationally and state by state at a rate we have not seen before." Thimerosal is a mercury-based preservative that was developed in the 1930s by Eli Lilly, and has been used regularly in vaccines ever since basically to boost vaccine maker profits by allowing drug companies to package vaccines in large containers instead of a single dose. However, years ago children only received a small number of vaccines that were injected with a period of time in between and one dose at a time. Since 1988, the number of vaccines given to children before the age of two has tripled. Lisa Blakemore-Brown, a psychologist in the UK, has been investigating the vaccine-autism link for years and says the reason the epidemic in autism did not occur sooner is because before the 1990s children "were given single vaccines with single amounts of mercury." "But with the introduction of triple vaccines," she explains, "the amount of mercury contained within the preservative was multiplied and the cumulative effects are only just now being discovered by the public." Once the cumulative amount of thimerosal that children were receiving through injections of 30-some odd vaccines was finally measured in 1999, the FDA discovered that infants were receiving more than 100 times the EPA's safe limit for mercury by 18 months. Internal documents from the FDA and CDC show public health officials knew about the increased mercury they were receiving at least since 1999. A June 29, 1999, email from FDA scientist, Peter Patriarca, to the head of the CDC office on vaccine safety, warned that the FDA was going to be criticized for being "'asleep at the switch' for decades by allowing a potentially hazardous compound to remain in many childhood vaccines and not forcing manufacturers to exclude it from new products." Mr Patriarca also pointed out that calculating the cumulative amount of mercury in vaccines was not "rocket science" and involved only ninth-grade math. He also noted the questions that agency officials would likely be asked as: "What took the FDA so long to do the calculations? Why didn't CDC and the advisory bodies do these calculations when they rapidly expanded the childhood immunization schedule?" An internal company memo that surfaced in a lawsuit against vaccine maker, Merck, proves the company knew infants were being injected with unsafe amounts of thimerosal back in 1991. The memo says a 6-month-old baby receiving shots on schedule would receive mercury 87 times higher than established safety guidelines: "If eight doses of Thimerosal-containing vaccine was given in the first six months of life (3 DTP, 2 HIB, and 3 Hepatitis the 200 micrograms of mercury given, say to an average size of 12 pounds, would be about 87 times the Swedish daily allowance of 2.3 micrograms for a baby of that size." On September 8, 2004, Dr William Egan, then acting Director of the FDA's Office of Vaccines Research and Review, told the House Government Reform Committee that prior to the mercury reduction initiative in vaccines, children may have received 187.5 micrograms of mercury by 6 month's of age through routine childhood vaccinations. People often ask why some children become autistic when so many do not. As a neurotoxin, thimerosal, has been linked to the depletion of the protective anti-oxidant, glutathione, which helps rid the body of mercury. People with autism seem to be more susceptible to this effect and most have low levels of glutathione. Therefore, their bodies have difficulty excreting mercury. A December 2004 report by the independent Environmental Working Group determined that autistic children have less glutathione than normal children. The study, led by Dr Jill James, a professor of biochemistry and pediatrics at the University of Arkansas for Medical Sciences, said a glutathione deficit "may contribute to the development and clinical manifestation of autism." In 1999, many drug companies claimed they were reducing the amount of thimerosal in vaccines. Some even provided product inserts that claimed that only a trace amount of mercury still existed in the final product. Others even claimed to be producing vaccines that were completely mercury-free. For instance, a September 1999, press release by vaccine maker Merck declared: "Now, Merck's infant vaccine line is free of all preservatives." However, On March 8, 2005, the LA Times reported that "Merck & Co continued to supply infant vaccine containing a mercury preservative for two years after declaring that it had eliminated the chemical." In fact, Merck continued to distribute vaccines containing thimerosal until October 2001, according to a June, 2003 letter from the FDA to Congressman Dave Weldon (R-FL), a doctor by calling, in response to an inquiry. Dr Weldon called what Merck did "misleading." "You had people literally into 2002," he told the Times, "getting shots with mercury, having been told it was all taken out in 1999." To see if vaccines were indeed thimerosal free, last year the group, Health Advocacy in the Public Interest (HAPI), sent four vials of different vaccines to be tested for mercury content to Doctor's Data, an independent lab, which specializes in heavy metal testing. The tests found that all four contained mercury, despite the claim by 2 companies that their vaccines were completely mercury-free. According to HAPI, all four vaccines also contained aluminum which greatly increases the toxicity of mercury for causing neuronal death in the brain. In fact, during further investigation, HAPI discovered that thimerosal was still being used during the production process for most vaccines. The drug makers claim that after production, they filter the preservative out of the final vaccines. However, heavy metal expert, Dr Boyd Haley, PhD, the Chemistry Department Chair at the University of Kentucky, told HAPI that its not possible to remove all of the thimerosal because mercury binds to the antigenic protein in the vaccine and cannot be filtered out completely. Experts says, a drastic decline in autism has not been seen due to the fact that the drug makers misled the public about when thimerosal was actually eliminated from vaccines. Because the FDA has never ordered a recall of the vaccines previously manufactured and shipped all over the country, many mercury-laced vaccines remained in the inventories of health care facilities and some had an expiration date as late as September, 2005. In addition, pregnant women and their unborn infants, are still being injected with a full dose of thimerosal in flu vaccines. The CDC has ignored the tremendous amount of scientific evidence documenting the injuries from mercury-laced vaccines and has continued to recommend flu vaccines for all pregnant women and children over 6 months old. Back in 2002, the research team of David and Mark Geier, released a study based on an analysis of tens of millions of vaccines given to during the 1990s, and presented epidemiologic evidence that demonstrated the association of the increase in thimerosal in vaccines with neurodevelopmental disorders. The Geier's analysis of the government's "Vaccine Adverse Events Reporting System" database showed statistical increases in the incidence rate of autism, mental retardation, and speech disorders in children receiving thimerosal-containing diphtheria, tetanus, and acellular pertussis (DTaP) vaccines, when compared with those who received thimerosal-free vaccines. According to the Geiers, the usual course of DTaP vaccine consists of primary immunizations administered at two, four, and six months, followed up by booster shots at 18 months and five years. By analyzing the database, the Geiers determined that there were a total of 6575 adverse reaction reports with the DTaP thimerosal-vaccines, compared to only 1516 adverse reaction reports with thimerosal-free vaccines. In one of their more recent studies in 2005, the Geiers assessed thimerosal exposure in about 110,000 children and found a statistically significant association between exposure to thimerosal and a host of neurodevelopmental disorders including autism, tics, attention deficit disorders, and speech and language delays. The public remains largely unaware of the autism epidemic because people hardly ever see autistic children out in the community. Aside from taking the children to school, parents seldom take them anywhere because of the difficulty of trying to control them outside of a routine environment. The increasingly number of children with this disorder is forcing public school systems to provide more special education classrooms to meet their needs. Autistics are the fastest-growing segment of special ed students and schools lack the trained professionals with knowledge of how to work with autistic children. Schools were caught completely unprepared for this epidemic. Unlike normal children, children with autism do not learn by watching other people and must be taught even the simplest skills such as making eye contact, waiting in line, following directions or how to hold a conversation which often requires one-to-one mentoring. Skills, behaviors and abilities vary with each child and about half of autistic kids have few or no language skills. Some kids also suffer from other problems that impair learning such as hearing loss or epilepsy and many are not toilet trained. In a program that serves Minneapolis students, each classroom usually has 6 students and requires one licensed special ed teacher and two special ed assistants. Toddler classrooms are smaller with 4 students and require one licensed special ed teacher and one special ed assistant. Services by speech and language clinicians, occupational therapists, social workers and adapted physical education teachers are also available at each site based on student needs. And the educational services reflect only part of the expense. Other costs include tuition for summer school to help kids retain skills, transportation costs, and psychological and behavioral evaluations. In 2003, the California National School Board Association reported that the number of autistic students in California had doubled over four years and represented 13% of the state's student population of 20,377, at a cost of up to $60,000 per student. In July 2005, a San Mateo County California civil grand jury released a report warning that increasing numbers of autistic children and the high cost of their education was causing a significant drain of resources for school districts. The report said the number of autistics in the San Mateo county had doubled since 2000, to more than 5,000, and the county needed to find cheaper special ed alternatives since federal and state funding had not kept up with spending. The grand jury pointed to a pilot project at a school in San Bruno, that paired four aides and one teacher with a small class and said it was cheaper than one-on-one mentoring, which could cost $50,000 per student. In one year, the number of children treated for autism at centers operated by the California Department of Developmental Services increased 13% between 2003 and 2004. Autism now accounts for more than half of the new cases handled at the centers, which treats various developmental disorders, with the vast majority of cases being kids 13 and younger. The number of autistics treated at the centers rose from 5,000 in 1993, to more than 26,000 in 2005. And the numbers are the same all across the nation. The Kentucky Cabinet for Health and Family Services estimates that in 2006, about 25,000 Kentuckians have autism spectrum disorders, an increase from about 1,500 in 1990. The US Department of Education all total spends about $53 billion a year on grades K-12 education. If the government provides $60,000 per year to educate the currently identified school-age autistics, the tab will run about $7 billion a year, or 13% of its entire budget. And each year the costs will rise as the number of autistics entering the system increases. On December 10, 2002, Dr David Baskin, a neurosurgeon and Professor of Neurosurgery and Anesthesiology at the Baylor College of Medicine, testified at a Congressional Hearing and told the panel that most autistic children will grow up and require lifelong care because they cannot live independently. He described what he referred to as a "horrible" fact and said: "Over one-half will never speak. Many of them will never be able to look at their parents and tell them they love them. It's worse than Alzheimer's Disease. There's been a tremendous focus on Alzheimer's Disease, but these children never had a chance to enjoy life before they lost it." According to Dr David Ayoub, author of the report, "Pregnancy and the Myth of Influenza Vaccination-Is it safe, is it effective, is it necessary?" government officials and vaccine makers are working hard to keep the truth about vaccines and autism hidden because if they admit guilt, it would mean they "have taken part in the largest iatrogenic epidemic known to man." "The fallout over admission of causality would be unprecedented," Dr Ayoub said. Dr Mark Geier is probably the most credentialed expert on vaccines in the US. When he was 23, he corrected a genetic disorder in a tissue culture, gaining distinction as one of the founders of genetic engineering, and earning him front-page articles in the New York Times and London Times, and a call from President Richard Nixon. He holds an MD and a PhD in genetics from George Washington University and spent ten years at the National Institutes of Health. After several more years as a professor at Johns Hopkins University, he opened the genetic laboratory and clinical practice that he co-owns today. He is also a court-certified expert on vaccines. Based on his years of research on autism he makes a statement similar to Dr Ayoub's. "The current epidemic of autism may well be the greatest iatrogenic epidemic in history. The damage already done to our society is already in the trillions of dollars. The damage of the 9/11 terrorist attacks, and that of the AIDS epidemic pale when compared to the current epidemic of autism." Eighty percent of autistics are under the age of 17. Soon states will be forced to provide support for an enormous number of disabled adults. Many autistics can not be left alone and must be looked after non-stop. If the vaccine makers are not forced to pay for the damage they caused, tax payers will be left to cover the entire expense of daily care and housing as well as life-long medical treatment for this generation of injured children. As for the other reasons why officials within the FDA and CDC keep denying the link between vaccines and autism, according to Congressman Dave Weldon, "If it is eventually determined that an entire generation of kids was essentially poisoned, a class-action suit against the federal government could be on the order of hundreds of billions of dollars, and so there's very good reason for them to try to cover this up." "And then when they appear as though they are covering it up," he says, "it makes you suspicious that it's all true." In the book, Evidence of Harm, award-winning author, David Kirby, explains that "the stakes could not be higher. Perhaps billions of dollars in litigation is pending against drug companies involved in vaccine production. The deep pocketed pharmaceutical industry has extended its financial largesse to politicians and scientists around the country, in open pursuit of indemnity against lawsuits and, some charge, in a darker effort to suppress evidence of thimerosal's toxicity." "The jury is still out on thimerosal, but deliberations are well under way," Mr Kirby writes. "One side will emerge vindicated, and the other will earn eternal scorn in the medical history books." Evelyn Pringle evelyn.pringle@sbcglobal.net Evelyn Pringle is a columnist for OpEd News and investigative journalist focused on exposing corruption in government and corporate America. Contact Author Contact Editor View Other Articles by Author 6 comments | Post A Comment Article source: http://www.opednews.com/articles/genera_evelyn_p_060813_government_investiga.htm __._,_.___

im sooo sorry to hear theyve refused your son an assessment , im going through the same thing, fingers crossed it will all be going to judicial review pretty soon..... i know how hard it is love, hang in there...... big hugs, paula

Autism charity in Bolton may have to close BOLTON, UK: A charity which cares for autistic children in Bolton may have to close because of a lack of funding. The registered charity, Bolton Kidz 2gether, has managed to secure enough money to pay for activities, but it has grown so big that the organisers, Jacqueline Mason and Stephanie Sherratt, are struggling to cope and it has become a full-time job.That has put a financial strain on the pair, who say the charity will have to be axed if they cannot raise enough money to pay them a wage. Things have become so bad that Mrs Mason has had to sell her house and move into one a third of the size. And they fear that closing the charity would upset the 150 autistic children aged between five and 16 who rely on the club, based at Horwich Resource Centre, Beaumont Road, Horwich. Bolton Kidz 2gether runs activities which help to stimulate members and help them to learn social and communication skills. It was set up in March 2005 by Mrs Mason, aged 45, and Mrs Sharrat, aged 37, who both have autistic children. Mrs Mason, who in Horwich with her partner, Phredd, and 17-year-old son, James, said: "It breaks our hearts that we might have to stop because we cannot afford to keep it going. It is vital for the development of the children, who learn social and communication skills when they come here. It is also good for the parents to meet others with autistic children because it can help them cope. "We are going to keep fighting and hopefully we will get some money from somewhere because we cannot let these children down." The club has received ?3,500 from Bolton Community Voluntary Service, ?4,500 from the co-operative fund and ?5,000 from Bolton Pastoral Care through Rivington and Blackrod High School. But these grants only cover activities. Mrs Mason and Mrs Sharrat say they would like six staff but their pleas have recently fallen on deaf ears - the BBC charity, Children in Need, turned them down and they are still waiting to hear from the National Lottery. Mrs Sharrat, who lives with her husband, Steve, five-year-old daughter, Anna, and autistic son, Michael, aged nine, said: "It has been a struggle. We have set up this group from scratch and I have been doing two part-time jobs to try and keep going. We have also had fundraisers because every little bit helps. Myself, my husband and a friend did the Great Manchester Run in May and raised ?1,400 and we are doing the Great North Run in October to raise some more." Mari Saeki, from Britain's National Autistic Society, said: "We offer our full support to Bolton Kidz2gether and hope that they can soon find the funding to secure the future of this great charity. The range of creative and innovative social and leisure opportunities they offer make such a difference to the lives of many young people with autism around Bolton." (Source: This Is Lancashire Network, August 8, 2006)

can we really point the finger to the mismanagement and ill funding of the NHS......of course its a contributary factor no doubt of that........ just feel that the merge between LEA s , Social services, and the medical profession is an unhealthy one. These people can and have been overzealous with there findings, they lease freely between themselves as to what THEY feel is in the best interests of our child.... i feel the departmental merge is/can be very detrimental to any asd child pre or post dx..... ive found all it takes is a derogitry comment from one professional and it has a knock on affect influencing every professional that you come across...... the government must be very careful when it comes to the childrens database, eg. i have a report from accident and emergency that says my son was 2yrs old and was presented to them with a buckle fracture to his ankle., apparently he fell off the couch........ the truth of the matter is that hes never broken a bone in his life..... hugs, paula