Issue 11 Spring 2011 £2.50 where sold

® Positive Parenting for Children with Spectrum Conditions

The Upside of Autism

Championing our Children Repeat After Me... NAS Chief Executive Mark STOP REPEATING ME Our panel discuss Lever on Turning the Tide echolalia Letter from the Editors Together for autism Hi and welcome to Issue 11! Together we work across the spectrum and from birth to adulthood. The Together Trust operates residential National Autistic Society, Mark Lever, homes, short break services (residential and fostering), is in the hot seat answering questions supported living, Inscape House Schools, a specialist about how the organisation is tackling issues relating to our kids. We loved FE college and community support. finding out about famous people with We can deliver specialist assessment, consultancy, autism for our front cover feature. diagnostic and speech therapy services, as well as Plus, there's some great information training for parents and professionals. on echolalia. Co-Editors: Debby Elley and Tori Houghton. Finally, it’s probably worth us telling you about the adverts you’ll read in Now that we have a new website up the magazine and on our online and running, you’ll be able to enjoy banners. AuKids isn’t bursting with extra benefits from your subscription. adverts as we reckon you would far If you visit us at www.aukids.co.uk you prefer to read articles instead. We can hook up with other members. No don’t rake it in with advertising one will be given any direct contact revenue either, which is why we aren’t details and it’s all completely secure. a very rich magazine! You can use the website to seek other However, the small number of readers in your area in similar advertisers that are given space have circumstances, just make sure that been given the rubber stamp by you select the ‘share details’ option AuKids. This means that we either under your contact options in ‘my have direct experience of the products To find out more details’. or services ourselves, or we have email [email protected] spoken to a parent who would There’s also up-to-date news on the recommend it to others. In other phone 0161 283 4848 site and other features, so plenty to words, we don’t just let anyone or visit www.togethertrust.org.uk keep you entertained whilst you’re advertise. waiting for the next issue to pop through the post. We do not, as a matter of policy, endorse specific clinical remedies or Registered charity number 209782 One other feature you’ll love is the therapy programmes, because we like opportunity to delve into the archive to remain impartial. So you can trust YWh[š[ZkYWj_edšikffehjši_dY['.-& and catch up on past issues. This is us. If you really like that policy, then only available to subscribers and we’re please excuse our shameful hints not charging any extra, but if you do about donations! have a little read, we’d love it if you’d send us a donation (using the handy If you like the magazine, please tell new donation button online). Every others about it and do feel free to ask little helps, and AuKids still needs us for leaflets if you know of a place plenty of help to remain afloat! Also, that would welcome information on us. you can use the website to sponsor Peter Lawson of Cygnet Health Care, Enjoy! who is doing a half-marathon for Specialist babysitting and befriending services AuKids in May - see News page. for children and young people with Autistic Go Peter! Tori and Debby Spectrum Conditions in the North West Whilst we’re talking cash, a quick reminder that if you send off for a Just Giving debit card (works like any top The winners of Issue 10’s “This is the competitions were: Gillian Levis, Given the special requirements of o up card), AuKids can benefit from a nly service ever of Lisburne School, Stockport; whic percentage of the amount you spend autistic children it can be difficult h has provided Faygie Halpern of Salford; Viv the ex at well known outlets such as to find a babysitter that you feel act support I Hancock of Stroud, Claire Smyton have wa Sainsbury’s, Debenhams, Asda, Argos, comfortable with, someone who nted for of County Tyrone, Northern my son for y Boots and B&Q to name just a understands them and has the ears Ireland; Lorraine Cason of Norwich now!” handful. experience of working with them. and Marcia Hamlin of Stevenage. This is where Time can introduce Well that’s the science bit, now onto Well done to all of you! you to people who have already this issue. The chief executive of the been reviewed and who have experience of and an interest in working with autistic children. Our front cover star is Delta Worts - see Page 4. The opinions expressed in Time babysitters and befrienders EDITORS: Tori Houghton and Debby Elley AuKids magazine are those PHOTOGRAPHY: Jennie Fielden BA (Hons) are all over 21, CRB checked and of the contributor. Please PRINTING: Minuteman Press Stockport seek medical advice before have experience of working with GRAPHIC DESIGN: embarking on any therapy or children and young people with behaviour intervention. All articles are copyright AuKids. autism. They all complete an www.periscopestudios.co.uk insight into autism training.

WHAT’S IN A NAME? Tel: 07942815845 Email: [email protected] Orchids are beautiful plants which, much like kids with autism, require Web: www.timebabysitting.com very specific conditions to grow. If they get them, they thrive. That's why we called this magazine AuKids. AU is also the chemical symbol for gold.

Want to read our next issue? Not a subscriber? Subscribe NOW at www.aukids.co.uk or send a £10 cheque with your name and address on the back, payable to AuKids magazine to: AuKids, PO Box 259 Cheadle Cheshire SK8 9BE. 2 AuKids is published by AuKids Limited, PO Box 259, Cheadle, Cheshire SK8 9BE, company number 7413180. Letter from the Editors Newsbites

One of AuKids’ subscribers, Paula McClinton, is also AuKids Reader Witnesses Autism the secretary of the Lisburn Branch of Autism Northern Ireland. She had the privilege of being present at Bill Passed in Northern Ireland Stormont to witness the Autism Bill for Northern Ireland being passed by the Northern Ireland assembly on March 16. She wrote to AuKids to say: “The Bill will give autism recognition as a social and 5 6 7 communication developmental disorder under the Disability Discrimination Act and will help ensure that people with autism have access, through an inter- departmental Autism Strategy, to the services they require throughout their lives. After many years of hard battling we have finally made it!” 4 Chair of Autism NI, David Heatley, added: “On a truly historic day the Autism Bill was voted through the final 3 2 debate with none of the MLAs (Member of the Local 1 Assembly) opposing the Bill. The Bill gives the broadest legislative protection in the United Kingdom and Ireland with a cradle to grave approach. Special thanks must go to Dominic Bradley who chaired the All Party Group for Autism and the MLAs from all parties who supported it.”

The Bill was the result, he added, of a long and successful lobby on the part of Autism NI, led by CEO Arlene Cassidy for almost ten years. Mr Heatley added 1. Arlene Cassidy, CEO of Autism NI 2. Dominic Bradley, Chair of the All Party Group for Autism his thanks to parents who had joined the lobby. 3. David Heatley, Chair of Autism NI 4. Dr Claire Hughes, Chair of Lisburn branch of Autism NI 5. Paula McClinton, Lisburn branch secretary 6. Arlene Hewitt, Lisburn Committee member “Without them the battle may well have been lost,” 7. Anne Hayward, Lisburn branch fundraiser he said.

Peter Runs For AuKids Cash Ready to Roll... AuKids is delighted to announce that Peter Lawson of AuKids sponsors Springside Services will be running the White Peak half-marathon in May to raise funds for the magazine. Peter is the services manager at the Stockport branch Before After of Cygnet Springside, an organisation providing specialist autism residential and outreach services. Peter as he is today, Cygnet Springside opened its North West operation at running for charity. around the same time that AuKids magazine was The 2009 photograph of Oily Cart, a theatre company launched and the two operations have watched each the Springside team in specialising in performances for other with interest ever since. AuKids magazine that young people with disabilities, is inspired Peter to follow taking its production of DRUM to In 2009, when Peter spotted himself in a photo in a weight loss campaign. AuKids (see above), he was shocked by his weight the Unicorn Theatre in London and decided to do something about it. from April 19-May 8. The multi- This year, Cygnet Springside became one of our sensory and interactive show is He enrolled in Slimming World and embarked on a sponsors. Peter said: designed for children aged healthy eating and running regime. He enjoyed running “I have decided to run for AuKids because it is an between three and 11 with so much that it became a hobby, and he started to run exceptionally informative, well produced and fun complex disabilities. marathons in aid of organisations that were close to magazine, developed by people who have a real his heart. For the first time, a version of understanding of autism and how individuals and DRUM designed especially for By 2010, Peter had made the headlines and was on their families can be affected by the condition. kids with an GMTV after the press heard about his dramatic weight “We want to do anything we can to help the condition will be staged. Call the loss - from 25 stone to 12 stone in just under 12 magazine’s publication to continue.” box office on 020 7645 0560 for months. Even Tori and Debby failed to recognise him details. The Unicorn Theatre is at a meeting and were waiting some minutes for Peter Co-editor Debby Elley said: “This is fantastic news, we situated close to Tower Bridge to arrive before they realised that he was in fact sitting are so touched at Peter’s commitment to our project.” and is a purpose built modern opposite us! setting for young people. Oily Cart often tours special schools. Peter became involved in raising funds for the Sponsor Peter! To join the mailing list, go to Parkinson’s Society after he lost his mother to the To sponsor Peter and raise cash for AuKids, you can www.oilycart.org.uk disease in 2005. He has run three half-marathons for donate online at our website. Look up www.aukids.co.uk the society at Meerbrooke, Leek and Macclesfield.

For more news, visit the news page on our website at www.aukids.co.uk 3 e spend a lot of time Rosie’s mum Sharon tells AuKids: “Rosie was illustrating the book as I was writing it, at AuKids focusing on because she really liked the story. Her The Autism Advantage how to help a child with drawings were just right and once I had seen autism overcome some of the them I couldn’t imagine the characters any other way. What she lacks in finesse, she limitations caused by the really makes up for in enthusiasm. I love condition. Well, call us self- children’s drawings, anyway, they lack indulgent but we thought it was inhibition and fill the page with an innocent time we waved the flag for the energy that people tend to lose as they get older.” upside of autism. Not everyone with autism has a special talent Rosie tells us: “I started drawing when I was really little. I used to draw the same picture and not everyone with autism over and over again. I remember when I was can use an interest to their in reception, I drew a tiger for the teacher. She advantage. Yet people on the said it was really good, she showed it to the class and I felt very proud.” spectrum have enjoyed tremendous achievements. Rose's definition of autism is “a type of awesomeness.” It can be a passionate interest Actor: Braeden Reed that drives them. Sometimes it’s She says: “Having Asperger’s can make you the finest attention to detail, very, very clever. I don't feel restricted by Asperger’s. My friends never mention it, American actor Braeden Reed, who has endless patience and lateral though they know I have my own specific autism, played six year-old Alan in the 2010 thinking that sparks success. ways and if they are good friends then they film starring Amanda Seyfried and Some people with autism have understand about that. The friends just get to Channing Tatum. His character has the same know the person that I am.” condition. astonishing memories. Here we celebrate what happens when Sharon adds: “People have been so positive “I am eight now and I was six when I started about the book. Everyone agrees that I was acting. My friend, Mr. Phil, asked me to being different MAKES the right to use Rosie's drawings. As it was a audition and I got the part of Alan. Alan has difference... book for our family and about our family, it autism like me. It made it kind of easy was really the only choice! because I know more about autism than most kids so I think I was able to do a great “Being a professional illustrator has meant the job! When I was little, I had lots of help with world to Rosie. She has learned through the learning and I think this helped me because experience that anything is possible, and I learned how to pretend real well. Artist: Rose King nothing need hold her back. I am sure that (known as Rosie) despite and in some ways because of her “Sometimes my autism makes me worried condition she will go on to great things. She about things, like if I am going to have fun doing the movie or if everyone will be sweet Twelve-year-old Rosie King’s enthusiasm for has a very individual take on life, and even to me. I don’t know what I’d say to another drawing was a big bonus when her mother though some small things seem to cause her kid who has autism and wants to be an actor Sharon decided to write a child-friendly novel problems, the big things (the things that most - maybe ‘Good luck!’” to explain autism in a colourful way. Rosie, children would find incredibly scary) do not who lives with her family in Wakefield, has seem to faze her.” Asperger’s. Her talent and insight helped her So, where will Rosie’s talents take her in the to interpret the book’s theme in a creative future? “I would like to be a comedienne/ way. actress with a pilot's licence. In my spare time The Daily Journal of Arabella Crumblestone I will draw and write about three novels. I will (from sharonkingbooks.co.uk) is a fairy story not marry, I would prefer to live in a caravan in which a sprite finds herself far from home with a dog, possibly a Labradoodle. If my and relies on two children, one of whom has brother, Lenny, is independent enough, he autism, to help her find her way back. The might want to come and live with me. characters in the story “I don't think that Daisy would be independent are based on Sharon and enough. I will be away on business or flying Richard King’s three aeroplanes quite a lot of the time and I don't children. Rosie is think that she would manage on her own. : depicted as Faith in the I love my brother and sister just the same, Map Reader Delta Worts story. Brother Lenny, though.” eight, and sister Daisy, Delta Worts, who is nine and lives in ten, who has Kabuki Manchester, loves maps. Why? “You get to Syndrome (a rare genetic see where you are in a book,” he says. syndrome), also appear as characters in the tale. “Maps mean absolutely everything to me. Turn When I buy a new map I always like it Dynamic Duo: Rosie to Page 10 to because I get to add it to my collection. and mum Sharon pose win yourself a When I look in a new map, I am excited with their new book. copy of The Diary because you never know what will be in the of Arabella next page! I feel excited because if I am Crumblestone thinking and I have enough money, I can buy the map! So if I tell you to go to Leeds, I can show you the way! I can direct people to the exact location.” This interest has proved a great asset to Delta’s family and will no doubt lead to a career in cartography. Mum Nikki says: “I know no matter how lost I get, Delta can always get me home. I’ll never need a Sat Nav!” : Sculpture of Alan Obsessions The Upside The Autism Advantage Turing at Bletchley Park, where Turing cracked The word ‘obsession’ implies the enigma code. something that is utterly comp- ulsive, negative and destructive. When I Grow Up A compulsive interest needn’t be Photo Photo courtesy of Jon Callas Autism has given the world creativity and negative, though. These adults originality in many forms. Here are a few used Wrong Planets’s forum to tell high profile examples... us about their successes. Jocundthelilac: “When I was about ten, Video Game Designer: I got the Harry Potter books for my birthday. Up until then, I hadn’t read Satoshi Tajiri any literature (it was all fact books and maths stuff). It inspired me to start p : writing my first proper stories. I was A love of insects and a Com uter Pioneer obsessed with HP for a good three or fascination for video A an Turing four years, during which time I grew games were the sparks l out of maths and started to be more that eventually led OBE, FRS (1912-54) Japanese game interested in English. Now I’m a poet and writer.” designer Satoshi Tajiri, Turing, who had autism, was influential who has Asperger in the development of computer RhettOracle: “I discovered radio when Syndrome, to create Pokemon. The science. During the Second World War, I was in my single digits. I have been game was not expected to sell well, but he worked for the Government Code fascinated by it ever since. When my instead sparked a multi-billion dollar and Cypher School at Bletchley Park, voice changed, it went deep baritone franchise and reinvigorated Nintendo Britain's code-breaking centre. He and suddenly I had the voice to do handheld gaming. devised a number of techniques for radio. Now I’ve been the staff As a child, Tajiri enjoyed insect collecting breaking German ciphers, including the announcer on three stations and I as a hobby and he wanted his games to method of the Bombe, an electro- make commercials and assemble allow children to have the feeling of mechanical machine that could find programmes on the computer. My voice catching and collecting creatures. He settings for the Enigma machine. He is on the radio and that’s pretty much became fascinated with arcade games also created one of the first designs for what I’ve always wanted.” as a teenager, though his parents worried a stored-programme computer, the ACE. about it. His video game company Game Evolutionary biologist Richard Dawkins Freak was established in 1989 and the has been quoted on Turing: “If anyone idea of Pokemon was conceived the could be said to have invented the following year. Tajiri pioneered the idea of future, it was Alan Turing. By imagining Autism at Work connectivity between a machine that could solve all The Danish company handheld game consoles. conceivable mathematical problems, employs software testers who are Electronic Gaming Turing had invented the concept of the autistic because of their efficiency, Monthly credited him programmable computer years before attention to detail, focus and accuracy. as one of the ten most anybody could see how to build one. Computer skills are highly transferrable influential people who The full power of his revolutionary ideas and often highly desirable. So remember, made the modern would not be appreciated for years, today's ‘obsession’ could be tomorrow's video game market. even decades.” lucrative career!

Musician: Gary Numan Read All About It... When it comes to a cool image, not many Being a classic loner didn’t exactly hinder If you fancy some inspiring can top electropop hero Gary Numan, who the image, though. In fact, the singer is autism-related bedtime reads, try: enjoyed phenomenal success in the early most famous for ‘Cars’, which reached Eighties. Number 1 in the UK charts in 1979. Numan Born on a Blue Day once had a near miss when he escaped By Daniel Tammet During a BBC interview for the programme from a potential attack in his car. “‘Cars’ is Synth Britannia, Gary recalled: “I was in a lot Published by Hodder just about feeling safe in amongst people in & Stoughton of trouble at school, I was sent to a child a car, because no one can get to you, psychiatrist - it turned out to be, apparently, you’re in your own little bubble,” Thinking Asperger’s. I felt more comfortable on my he explained during the same in Pictures own. The classic loner I suppose, didn’t go interview. out drinking, didn’t go out clubbing too By Temple much.” Grandin NOW: Gary still tours Published by and records music. The Bloomsbury THEN: Gary Numan at the height of Pleasure Principle Live his fame in Newcastle, 1984. was released in 2010. Send in the Idiots By Kamran Nazeer Published by Bloomsbury

Take a quick glance at some other distinguished names in the world of autism and check out this excellent website: www.mnddc.org/asd-employment/ Photo courtesy 2-wow-people.html Photo courtesy of Howard Barlow FRPS. Barlow Howard of courtesy Photo of Ed Fielding 5 Ask the Experts

‘‘ My daughter repeats a lot of what I say and what she hears on TV. I’ve heard about echolalia - what is it and should I discourage it? ’’ DID YOU KNOW WE’VE GOT ECHOLALIA? words, rather than accept the words at face value; thus, Jenny is demonstrating that she is stressed - not that she wants to WE’VE GOT ECHOLALIA? sit down. WE’VE GOT ECHOLALIA? Palilalia refers to the repetition of a word, usually involuntarily, that the individual has heard at the end of a sentence. Recognising it becomes very Luke Beardon important when giving verbal Luke is a senior lecturer in choices to a person. For autism at The Autism Centre, instance, ‘Do you want tea or Sheffield Hallam University coffee?’ may result in a reply Autism in the Wild of ‘coffee’, but ‘Do you want Echolalia comes in various coffee or tea?’ may result in forms, but simply put is the ‘tea’. This is not a meaningful may take different forms repetition of words or phrases choice, simply palilalia, and it is (interactive, non-interactive, with that a person has heard. There best in such circumstances to or without comprehension). For are various reasons for echolalia, give a visual choice. example, echolalia may be used and it is important to ascertain Lastly, the individual may simply to take a turn in conversation if why your child is repeating gain huge amounts of sensory the child does not understand words. Some reasons include: pleasure from the sounds of what was said; to request • form of learning certain words (this may be a something that is offered or to • delayed echolalia sign of synaesthesia*). say “yes”; to hold information in • palilalia In summary, echolalia is not memory until it is understood, to • sensory pleasure direct one’s own actions or to something that should be Barry M. Prizant regulate emotions (to calm All children go through a period automatically discouraged; Director, Childhood Communication oneself). What is interesting is of echoing speech in order to having a better understanding Services. Adjunct Professor, Brown that all children (and even learn meaning; it is often of the reasons behind it should University Center for the Study of adults!) use repetition of speech suggested that children with help understand the individual. Human Development, USA. or inner language (thought) for autism who are echolalic are Web: www.barryprizant.com the same purposes. more likely to go on to use *synaesthesia - a neurologically-based Email: [email protected] language effectively than those condition in which stimulation of one Echolalia should not be who do not. In such an instance sensory or cognitive pathway leads to discouraged, as research has it is obviously not a good idea automatic, involuntary experiences in a Echolalia is repetition of speech demonstrated that children who second sensory or cognitive pathway to discourage echolalia. that a child has heard. If the use echolalia make better speech is repeated immediately, progress in language and social Delayed echolalia tends to be it is referred to as Immediate communication than those who the repetition of a 'stock' word Echolalia (Adult: “Do you want do not speak. However, we or phrase - I believe that often to go out”? Child: “Do you want should help a child move this is an expression of an to go out?”). Delayed echolalia through echolalic stages on to associated emotional state. is echolalia that is repeated more creative language. In most For example, if the child “Sometimes sometime later, and may include cases, we see echolalia as a associates the words 'sit repetition of videos, previous stage on the way to the down Jenny' with being I used to repeat conversations or songs. In the development of creative, stressed, because in the 1960s and 70s, it was believed conversational language. past when she is the same words over that echolalia needed to be Echolalia may be addressed by stressed she has been and over as this made discouraged or even punished. simplifying the language we use, told to sit down, then at me feel safer ” Since that time, our research breaking down what a child is times of distress Jenny has demonstrated that echoing into simpler, shorter may repeat the phrase over Therese Joliffe, immediate and delayed phrases and using visual and over again. It is very an adult with autism. echolalia may serve important supports and written language useful in such cases to work purposes in communication and for children who are able to out the meaning behind the in language development and read.

The views reflected in these columns are the panel’s personal opinions and may not be relevant to all children with an autism spectrum condition. 66 Parents should embark on intervention programmes only after following the advice of their child’s paediatrician and/or occupational therapist. cognitively linked with parties and fun times - or flying high in "Bobby doesn't repeat the sky. everything you say, but he does repeat phrases from film and TV. At Although echolalia may appear times, he repeats great chunks of familiar counter-productive to your dialogue, which seems to comfort and amuse daughter’s communication skills development, it is not. Rather, it him, and his memory for it is unbelievable - he is evidence of the autistic recollected word for word the entire first half of individual’s way of thinking, Toy Story in the car the other day. He also 'cuts particularly in relation to non- and pastes' phrases that he's learnt from TV into Peter Lawson abstract perception. Your Services manager at the Stockport daughter’s echolalia is a sign his own social situations in quite an appropriate branch of Cygnet Springside, a facility that she is able to learn and use way. I wouldn't say it's a negative thing with us. which provides specialist autism language and that her comm- I think sometimes he can't tell the difference residential and outreach services. unication skills can further Call: 0161 443 4060 develop; consider echolalia as between what's in his head and what's Email: a stage in her language and outside it, and that it's a process that helps [email protected] cognitive development. him to make sense of language." There are several different Echolalia is often associated Debby Elley, mum to twins Bobby with autistic spectrum methods in addressing echolalia. conditions, although it is not However, I rather like the and Alec, age 7. exclusive to autism and can Judevine Centre advice, as it also be associated with can be easily applied and might developmental and learning be a useful starting point for disabilities. The term refers to you. An abridged version is as follows; the immediate or delayed repeats what you say because repetition or ‘echoing’ of Treatment for echolalia involves she knows that she is expected sounds, words or phrases, responding to the person to say something (in response to much as you describe your literally. If the person echoes, a question, for example) but daughter doing. “Do you want juice?” (after you doesn’t know what to say. If her echolalic speech is mostly As the terms imply, immediate have asked the question), say: delayed it may be that she is echolalia means an immediate “No thank you.” Follow this with: trying to initiate or maintain a repetition, so, for example, if “I think you want to tell me conversation with you, but you asked your daughter ‘Would something though.” Then use again, doesn’t know how to do you like a drink?’ she would sign language or another visual cue to prompt the person to this using more appropriate immediately respond to you with Greg Pasco language. If you interpret her the same question. Delayed say: “I want some juice.” Research fellow based at the Centre echolalic speech as being part echolalia may involve more Similarly, if you ask the person, for Research in Autism & Education. of her attempts to communicate complex or longer dialogue “Do you want a cookie? Yes or Greg is currently working on the meaningfully, then you can try to being reiterated at different no?” and the person echoes British Autism Study of Infant respond in an appropriate way times, sometimes repeatedly, for your last word (‘no’), accept this Siblings (BASIS), and for many (just as we might engage a baby example lines from her favourite response. Say, “You said ‘no’, years was a speech and language in a ‘conversation’ even though film, TV adverts etc. She may that's okay, I will eat the cookie therapist working with children and we don’t really know what her even quote (almost verbatim) myself.” If it looks like the adults with ASD. babbling means). things you have said to her at person does want a cookie, say: Echolalia - repeating words and earlier times. “It looks like you changed your In general, it is probably best phrases exactly as other people mind, if you want a cookie, say, not to discourage your daughter Echolalia is actually an have said them - is a very ‘yes’”. Prompt for a ‘yes’ and from speaking echolalically - important part of all children’s common feature of the spoken reinforce a correct response. she may misinterpret this as early communication and language of children and adults meaning that she should not understanding development; with autism. speak at all. If her echolalic however, as the speech does not appear to have child develops, their learning Depending on how much non- a communicative function, it becomes, at least initially, echoed language your “Echolalia is a may be that she just enjoys the ‘Gestalt’ in nature, i.e. he or daughter has, the fact that good sign because it predictable nature of the she learns that words not she is using speech at all repetition (or your response to only sound as they do, but indicates that the child’s (compared with the large her repetition). If this is the case are linked with many brain is processing language minority of children you may feel that it is best not sensations, emotions and with ASD who don’t even though he may not be to respond or react after the first outcomes. For example, use speech to comm- two or three times she says the word ‘balloon’ may understanding the meaning of unicate) can be seen something. If her echolalic conjure up associations as a positive sign. the words. These children need speech occurs when you are with shapes, colours and Many children whose offering her a choice (You ask, noises. to learn that words are used speech starts out being predominantly “Do you want apple or orange?” As the child’s development for communication” echolalic eventually use - She replies “Apple or orange”) continues, learning you could try offering , language in a more becomes increasingly conventional way. non-verbally - by holding up an analytical, leading to the ability an adult with autism apple and an orange and letting to apply more abstract contexts It can be hard to know how her choose by pointing to or to words and phrases. The word to respond to echolalic speech. reaching for the one that she ‘balloon’ may therefore be It may be that your daughter wants.

? Do you have a question for Ask the Experts? E-mail us at [email protected] 77 Enter Our Prize Questionnaire and Get Quoted in Our Book! The AuKids Team is writing a book - and we need your help.

Yes, fame awaits you. Earlier this year numbers are accurate) and send to us Tori and Debby met up with two at AuKids, PO Box 259, Cheadle, commissioning editors who have Cheshire SK8 9BE. asked us to write a book aimed at families and friends of a child with an If you prefer, you can fill it in online at autism spectrum condition. We see www.aukids.co.uk You don’t have to this as an opportunity to write a answer every question - beginner’s guide for anyone who is whatever you tell us will be completely new to appreciated. autism. Every questionnaire We are still in the received between now very earliest stages and our next issue will be of preparation but entered into a prize draw we’d like our parent to win an Animal Flash Pad readers to be a part from our friends at The of our book by Sensory Toy Warehouse. sharing your stories, This is an electronic touch, your thoughts and lights and sounds game your feelings. Win an Animal Flash Pad board for ages six and up. It’s touch sensitive, featuring We’d also like you to 16 multi-coloured LED lights pass the second half of this and exciting sound effects. Bound to questionnaire to someone you know be a hit with sensory seekers! In who has made a difference to your life short, the business, and worth £24 - since your child was diagnosed. They so be in it to win it! Look up can be a relative, a friend or simply www.sensorytoywarehouse.com for someone who has had professional more info. involvement with your family. By taking part you and your We know you don’t like to ruin your friend/relative agree to any or all of precious magazine (!), so please fill in your answers being used in the your answers on separate sheets of book. We may choose to contact you paper (just make sure the question to find out a little more, too. Thanks!

Specialist short-break (BLOCK CAPITALS IF YOU’RE service for children Questions for you HANDWRITING IT, PLEASE): and young people Your name Your child’s name and age Your city/town 1 2 3 with Autism Can you think of someone who has supported you since your child was 4 diagnosed? Tell us what they did to make a difference to your life. Tell us Everyone needs who they were, what their relationship is to you and try and share with us a a change and time particularly good memory of when they helped out. Simple memories are as off occasionally, powerful as special ones. You can write about their effect on you, their whether it’s for an effect on your child, or both. Comment on attitudes as well as/or actions. hour, a day or a week. Now, we promise to keep you anonymous for this one! Can you share with This can be especially 5 us an example of where things have gone wrong because either a friend or true for carers - a family member did not understand your child or your circumstances? caring can be What could this person have done to make things easier for you? Tell us exhausting. their relationship to you, but we will keep your identity secret. Prospects provide a range of residential short breaks services Questions for your relative or close friend that enrich lives, support families What have you found valuable in helping you to understand the child you and offer fun and 1 know who has autism? independence. Were there any ‘light bulb’ moments when you felt you understood what 2 this child or family needed from you? In your position as a friend or family member, what would you like to have 3 known more about after diagnosis? Prospects Short Breaks 4 Knowing this family as well as you do, what has been hard for you? 01978 313 777 Have you any wisdom that you’d like to share with others who have a 5 close friend or family member in the same situation? www.prospectsbreaks.co.uk What have you learnt from the experience of having someone close to 6 We also offer 38 and 52 residential you affected by autism? care & education placements Finally, if you are happy to be contacted about any of your answers, please supply us with a telephone and/or e-mail address for both yourself and your friend/family member.

Many thanks. You’ve just done your bit to educate the world in autism! O N T H E S P O T Mark Lever Chief Executive of the National Autistic Society

commissioners to sign up to it. See: The survey also indicated that there is www.autism.org.uk/Get-involved/Campaign-for- change/Our-campaigns/You-Need-To-Know.aspx widespread ignorance on autism in the for more information. education sector, with children in a mainstream setting suffering as a result. We will continue to work at both a national and local How can we educate mainstream teachers level training of professionals in autism across the Cuts are having a direct effect on autistic on autism? public sector. children, with speech and language therapy There are some notable pockets of good practice On holiday in Denmark, a reader said she one of the highest profile services that has but unfortunately the landscape is patchy and was struck by the much greater level of been hard hit in certain areas of the UK. varied. There is plenty of evidence to suggest that autism awareness than you would find in the What is the NAS doing to help parents facing young people on the spectrum do not get the supp- UK. How can we improve the situation? cutbacks in autism services? ort they deserve in mainstream education. This is evidenced by the horrendous bullying and exclusion Greater public awareness really is the Holy Grail for The cuts are going to affect everyone, with all statistics that blight the lives of many families. all of us. We would love to have the budget to run services being targeted. The important thing for all massive national media campaigns. Until we do, we of us is to ensure that the most vulnerable in our Our Make School Make Sense campaign raised the profile of this issue but there is still much to be done. actively try to generate coverage of the issues on society are least affected - and this includes the the back of our campaigning and lobbying work many thousands of families affected by autism who The SEN Green Paper sets out the Government’s proposals for reforming the SEN system and training along with the impact of our service delivery at a are struggling to get even the most basic of local level. support. is a key theme. Given that there are 88,000 school aged children with an autism spectrum condition in Our relationship with national politicians is good. We We are supporting campaigns nationally and locally England and that the vast majority of them are in frequently come out in the top three when they are to ensure autism stays firmly near the top of mainstream schools, every school should be ready surveyed on which campaigning organisation is the everyone’s agenda. It is important that we all take to support a child with autism. most effective. Given the scale of some of the the opportunity of not just demonstrating the impact Each school should be able to access specialist organisations, this is no mean feat. Our work in of investing in services but the impact of not expertise to help them. There is a separate achieving the Autism Act (the first ever piece of investing in services. The autism helpline can help information section on our website for professionals, disability-specific legislation) and the delivery of a you to have a good understanding of your rights. which includes training programmes available from national strategy for adults with autism is evidence The NAS has also produced a campaigning toolkit the NAS which I would encourage teachers to that autism is embedded within the political agenda. to help you campaign at a local level against cuts. consider. The NAS Autism Accreditation scheme However, there is much more to do and our You provides a ‘kitemark’ of good practice and I would Need to Know campaign is evidence of this. We You can download the toolkit from our website must never underestimate the impact that parents http://www.autism.org.uk/news-and-events/news- encourage schools to take part in the scheme if they are serious about providing support to young can have at a local level by speaking with one voice from-the-nas/nas-launches-new-guide-to- - please join us to add weight to our voice. challenging-cuts-to-local-services.aspx or e-mail people with an ASD (Autism Spectrum Disorder). [email protected] What do you think of the Statementing Finally, what changes have you seen since To support our campaigning work it is a good idea process as it stands? in recent years that you have found to become a member of the NAS. The more support encouraging? we have, the more authoritative our voice will be. I think we all agree that the current system is far from perfect, but it does give parents some statutory There is much to be encouraged by but still much, In the NAS survey on diagnosis, parents said weight in their battle for appropriate support. The much more to do! I am encouraged by the political that they felt they lacked support after SEN Green Paper sets out a number of fundamental response we have received to our campaigns over changes to the system, not least of which is a the last two or three years which have delivered diagnosis and were often left to fend for combined health, social care and education tangible outcomes at a national level. I am themselves on a daily basis. What is the NAS assessment. We see this as a positive move, but encouraged by the more realistic and positive doing to support parents of newly diagnosed only if statutory enforcement is maintained. We are portrayal of autism in the media. I am encouraged children? currently capturing views from parents and young by the interest shown by professionals in our people as part of our own consultation on the Green conferences - attendance is growing every year, Let’s get back to basics here - the fundamental Paper and will be submitting these to the Department and I am encouraged by organisations’ willingness problem is that there are too few specialist of Education to ensure that any new system better to work collaboratively. diagnostic services and as a result there is no meets the needs of families affected by autism. However, we still need to translate national policy ‘need’ to provide post diagnostic support. And for to improve services at a local level, we still need to those who do go ‘out of county’ to access a To stay up to date with the work we are doing on remove the stigma associated with autism and we diagnosis there will be no guarantee that this will be autism education, sign up to the NAS education still need to improve awareness and understanding recognised by their home authority. update. See nas-education-update.blogspot.com for more information. so that families affected by autism are free to live This has to be put right. The National Institute of the life they choose. I for one will continue to work Health and Clinical Excellence (NICE) has recently hard to ensure that the NAS does its bit in trying to There are huge inconsistencies in services achieve this. published a draft guideline on diagnosing autism in available to parents of autistic kids through- children and young people. The final guideline will be published later this year. This should help out the UK. How can we strive to avoid a improve consistency in diagnosis across the country postcode lottery? and improve the experience for children and LINKS families. As a result of our campaigning, NICE is We recognise this - and many of the parents calling also developing a guideline on support and our helpline raise this as an important issue. A lot of SOS: Save Our Services interventions for children with autism, which is the problem is down to the low levels of autism A toolkit on fighting cuts at a local awareness and training amongst professionals who expected to be published in the next few years. level: www.autism.org.uk/en-gb/news- have a responsibility to support young people with and-events/news-archive/1-january/nas- We all know that there is plenty of evidence to an ASD. launches-new-guide-to-challenging-cuts- support the impact of early intervention on the to-local-services.aspx Our ‘You Need to Know’ campaign highlighted the outcomes for children and young people and this outrageous situation for children in the CAMHS must surely start with early diagnosis. AuKids Joining The National Autistic Society system and called for a number of changes to www.autism.org.uk/en-gb/shop/nas- magazine really does fill a gap here. For many support young people in the mental health system. membership.aspx parents not knowing where to turn, the articles and As part of the campaign, we worked with a group of case studies from professionals and parents provide young people to draft a Charter for CAMHS services Join Our Campaigner Email List a valuable source of advice. on what they could do to better meet the needs of e-activist.com/ea-campaign/clientcampaign.do children and young people with autism. The group ?ea.client.id=10&ea.campaign.id=95 to be kept The NAS also provides a number of resources recently launched the Charter and a film about up to date on our campaigning work - see right. making the Charter and we are asking local health NAS Education Update nas-education-update.blogspot.com New Books The following publications Competition are hot off the press from Reviews We have copies of the book tos. Reviews give away to five lucky reader Jessica Kingsley Publishers. Just answer this question. Real-life artist Rose King is depicted BOOK as which character in the Daily The Daily Journal of Journal of Arabella Crumblestone? Arabella Crumblestone Send your answers to [email protected] From Home to School , Cheadle, or to AuKids Ltd, PO Box 259 e 30. with Autism - How to By Sharon King Cheshire, SK8 9BE no later than Jun Make Inclusion a Available from www.sharonkingbooks.co.uk The first five correct respondants will be notified by post. Success £5 plus £1.50 p&p - £1 of the cover price is By K.I. Al-Ghani and Lynda donated to the National Autistic Society Kenward Illustrated by Haitham Al-Ghani The Daily Journal of Arabella Crumblestone is passing winter season. Values such as caring, £19.99 • ISBN 9781849051699 a charming tale about what happens when a constancy, loyalty and love are all important fairy is taken from her home (a stone wall) elements of this gentle story. Beginning school is a challenging time for when she is found by two children on holiday. The fact that the children in the book are most young children. For those with an The well-meaning children befriend Arabella based on the author’s own family lends this Autistic Spectrum Disorder (ASD) the and through her diary we witness their little book a touching context, and daughter significant change this entails can be touching attempts to understand her. One of Rose (who appears in the tale as Faith) is the overwhelming, and everyone involved will be the human children, George, has autism, and 12 year old artist behind the story’s lovely little in need of guidance to make the transition as through the fairy’s eyes we see him afresh - sketches (See page 4). smooth and as stress-free as possible. not as society sees him, but as a warm human spirit. Throughout the story, there’s a sense of This positive and practical book arms schools Little girls aged about nine to12 will enjoy natural order, depicted in the beauty of the with a wealth of essential information, easy- Arabella’s adventures. to-implement strategies and photocopiable resources that will help to make early school days an enjoyable experience for young children on the spectrum. BOOK Helping Children to Inclusion in the Primary published by the National Autistic Society. Improve their Classroom - Support Both authors are teachers and former SENCOs Communication Skills Materials for Children with with bags of experience of working with autism - Therapeutic Activities Autistic Spectrum Disorders in mainstream settings. The guide takes the for Teachers, Parents reader in detail through common traits and By Joy Beaney and Penny Kershaw difficulties and then moves on to give simple, and Therapists Published by the NAS practical advice on how to adapt the curriculum By Deborah M. Plummer 2007 • £8.99 • NAS code 495 and the learning environment to support an Illustrated by Alice Harper ISBN 9781899280957 autistic pupil. It includes a guide to using visuals with examples of visual timetables, talks £18.99 • ISBN 9781843109594 about unstructured times and promoting We like the opening statement of this slim positive behaviour and has a great guide to volume. It says ‘We are often asked ‘Why TM This creative book is full of fun and imaginative making your own . should I do all this for ONE child in my class?’ ideas to help children aged four to 11 with a As well as a useful further reading list at the speech or language delay or disorder to develop We believe that the ideas and strategies we suggest will benefit all the children in the class.’ end, it also incorporates forms to fill in, so that their communication skills. It is packed with ac- teachers can start putting what they’ve learnt tivities and games specifically tailored to help So say authors Joy Beaney and Penny Kershaw, into practice immediately. A super resource for develop skills such as articulation, vocabulary who wrote this excellent guide to supporting teachers who may be new to working with a development, breath control, conversation skills autistic pupils in a mainstream setting, child who has autism or Asperger’s. and non-verbal communication. Tips for person- alising and shaping the activities are also pro- vided. A comprehensive theory section supports the ideas presented, and practical advice on working with groups and individuals and in different settings is also given. CD-ROM Playing with Sounds and Letters Aspies on Mental From Yellow Door’s Come Alive Phonics range Health - Speaking £60 • Available direct from www.yellow-door.net for Ourselves By Deborah M. Plummer I’m not going to fib, reinforcement, so it’s great speech and this award-winning CD- language therapy, too. Edited by Luke Beardon ROM comes with the and Dean Worton Whilst the child is following the action, they’re sort of price tag that also following the path of the letter. A highly £14.99 • ISBN 9781849051521 will make you raise an interactive element allows them to trace the eyebrow or two. But it’s worth a letter whilst moving another shape along it. mention because I’ve never seen quite such an engaging way of learning the alphabet This is a lovely resource, imaginatively designed for special needs kids. Each letter designed for learning through play and highly People with (AS) can be comes with its own song and little theme. So recommended. It really engaged my son Alec, particularly at risk of developing mental health for ‘a’ it’s an acrobat moving around a circus who has severe learning difficulties as well as difficulties such as anxiety and depression. ring that’s in the shape of the letter, and for autism. Bobby, who is high-functioning and in Here, adults with Asperger Syndrome speak out ‘b’ it’s a boat moving down a canal in the a mainstream school, enjoyed practising the about their own experiences of mental health shape of the letter, you get the idea. letters too, so it works on every level. Have issues, offering sound advice for other Aspies a look at the demo at www.yellow- and providing valuable insights for family, The phonetic sound of the letter is repeated door.net/come-alive-phonics/interactive- friends and also for mental health professionals. as part of that letter’s song with constant cd-rom Debby Elley

Not got much cash spare? Cerebra is a UK charity for children with neurological conditions Send in your reviews of a book or DVD to [email protected] including autism. This fantastic charity operates a really great You can also review items from your child's point of view - older children postal lending library with plenty of books on autism - you can borrow books and sensory toys with no postage costs to pay. may like to write their own reviews. No more than 150 words, please. Just look up www.cerebra.org.uk BOBBY The Last Word

ALEC By Debby Elley, journalist and mum of twins with autism. SENSO When it Comes to the Crunch, NG RY TI NEEDS RE T I IAL SO O C C UR Y We Like the Difference X PE C S E S E S & Having said So Long, Farewell, Auf There is nothing wrong with this Wiedersehen, Goodbye to my diet, biscuit at all, I can testify, as I scoff it I was recently chomping my way in a single gulp. The factory machine through the new broken biscuits that stuck it together may have been selection that our milkman had having a bit of an off day, maybe it delivered. The development of broke up with its girlfriend the night doorstep deliveries has been before or something. In any case, it universally welcomed by my family, wasn’t really looking at what it was who recognise that when it comes to doing and the result was a slightly my strengths, regular stock taking of misaligned biscuit. Nothing drastic, the fridge most definitely doesn’t just a bit skewed. Other biscuits had feature. met a similar fate, their delicious potential totally disregarded simply A Gavin was joining me in perusing the T ! because on a very superficial level S surprise contents of our broken biscuit they didn’t look quite right. G E box and we ended up bemoaning the RE IC narrow-mindedness of our society, Thank goodness for the doorstep AT PR one that maintains that only a biscuit delivery service, we say, concluding which is a hundred per cent perfect that it’s not only a good thing to buy will eventually make it into the packet. these because they’re a bit cheaper, LetLeet uus iinspirennssppire yoyou...u... but it also allows us to adopt the “I mean look at me,” said Gavin, snooty high ground, hitting back at a impersonating a jammy dodger. It’s society that reveres perfection and www.sensorytoywarehouse.comwww.sensorytoyywarreehouse.com difficult to know how to personify a can’t see the good in anything slightly biscuit, but humanising random different. objects is something that he does rather well. He once had me on the Of course, that made us think of verge of tears by adopting the autism. If biscuits that are a bit wretched manner of a neglected different are frowned upon, what wooden cuckoo that had been locked chance have human beings got? Cygnet Health Care inside our hall clock for several months (on account of it being so Luckily, there’s people like us, who not Autism and Asperger’s Syndrome Services ruddy annoying). By the end of his only like these broken biscuits just the pitiful soliloquy, it was allowed to way they are, but actually prefer them, enjoying their unpredictability and Happy warble from the landing until well into to support the night. celebrating their quirkiness with an enthusiasm that may well, to the out-

Anyway, “Look at me,” says the sider, suggest a rather lame social life. ® talking biscuit. “What’s wrong with me? Why didn’t I make it into the And Bobby and Alec? packet? All my friends did...” (sad They didn’t even notice face). the difference. They didn’t study them Specialised services CYGNET’S OTHER AUTISM for long enough to care. exclusively designed to meet SERVICES INCLUDE: Springside South West, the needs of young people Exeter: Outreach with autistic spectrum support services. conditions and their families. The Springs Community, Kent: Residential care for individuals aged 16-64. OUTREACH SUPPORT: The Springs Unit, For individuals aged 5-64. Harrow: Secure inpatient FULL TIME AND SHORT BREAK care for adult males with autism & Asperger's. RESIDENTIAL SERVICES: For more information For young people aged 5-17. on any of our services PARENT SUPPORT FORUMS: please visit www.cygnethealth.co.uk Providing advice, resources and the or call Cygnet Central: 1 chance to meet other parents/carers. 0845 070 4170 ST

For more information contact Amy Stanion, Services Coordinator 2 Tel: 0161 443 4060 Email: [email protected] ND 3 RD 11 Readers’ Page

Celebrity

Spotlight Fraser Burrows Thomas Cason

aged 3 Diagnosis: Autism. aged 4 Diagnosis: Autism. School: St John’s Pre-school Playgroup, My family: Mummy, Daddy, Big Sis Carlton, Nottingham. Eleanor and Maisie the dog. I love: Chocolate biscuits, jumping, big School: Loddon Nursery School, hugs, having fun at playschool, In The Night Norwich. Garden and Mr Tumble and going to the park. Best habits: Always happy I hate: Getting my hands dirty. and laughing. My personality: Jumpy, funny and Worst habits: Wanting everything NOW!!!!! cheeky but a bit stubborn. Breaking computers and Wii consoles. Ambition: To ride on the Ninky Nonk I love: My big sister Eleanor, dancing, our with the Tombliboos (like you do - Ed.) trampoline, my train set and being outside. I hate: Hot food, not getting my own way. Want your little star to appear on our Celebrity Spotlight page? Send your own answers with a jpeg picture of your child in Ambition: To be able to get my point across. action to: [email protected]

Keep in touch At www.special-needs-software.co.uk you can find simple games designed for touch screen computers, all for free or £1 to download! Lovely!

o Boldly Go Where No Website Has Gone Be A new website aimed at parents off ochildrenre... with disabilities has been launched for the West Sussex Sorting the Stress area. Reach Out is a fantastic resource www.reachoutwestsussex.org.uk aimed at helping parents to ‘My son Jacob is seven years old and has ASD. He has very find the best information, advice and places to go high anxiety levels and worries about lots of things. Every night, after story, we do ‘worry time’. We talk about about all in the region. my son's worries that he has put in his worry box (in his head) throughout the day. We also have a ‘deep worry box’ which we open up, too. It's a fab way of helping him deal with Tactile Tassels his anxieties with lots of reassurance and cuddles from his ‘Albi loves to play with people’s hair. mum.’ Thanks to Netbuddy for this! www.netbuddy.org.uk As an alternative I got him old curtain tassels which work nicely.’ Thanks to Sponsored by Netbuddy for this! www.netbuddy.org.uk Awww, fab parent! Cygnet Health Care & www.aukids.co.uk Think green! Recycle AuKids