Issue 21 Autumn 2013

® Positive Parenting for Children with Autism Spectrum Conditions

Blinded With Science What should we believe about autism?

Cyber Mentor Keeping your junior technophile safe!...

Get Image Conscious Making visual support work at home

WI NA sensory tent and toys worth over £150! LLeetttteerr ffrroomm tthhee EEddiittoorrss Debby Tori

Your Own SLOGAN Hi and welcome back to Added to Our Range! ! Our T-shirts have gone down a storm, and for the autumn with caps, book bags and pump bags added to the range, our kids are looking great! As usual, so much to squeeze in and As always we’d like to thank our Now there’s a chance to create your own so little space….but not for much graphic designer Jo Perry for bringing prize-winning slogan for the quirky AuKids longer! From January 2014, AuKids will our ideas to life, which was particularly collection at www.finsdesignandprint.co.uk be increasing in size by four pages. important for the ice-cream sundae This doesn’t sound like much, but article. There are two categories : when you consider that it’s a third of the magazine’s current size, and when CHILD CATEGORY you also consider how much content Dream up a slogan that kids can wear we can pack into a small space (the on an AuKids’ T-shirt. editorial equivalent of 50 elephants in a ADULT CATEGORY telephone box), then you should be as Think of a slogan that adults who work excited as us. with children with autism can wear. Why have we done this? Well, we took Remember, keep it simple and positive! the hint. Our readers always say great One autism slogan from each category will things about AuKids, your only criticism be added to the collection and winners will seems to have been that there isn’t SWEET SUCCESS: Our Autism receive a child’s T-shirt and bags for the quite enough of it. kids’ slogan and adult T-shirt and cap for Sundae Dessert feature the adults’. Of course, we have to somehow pay In fact, you liked the ice-cream sundae for the cost of extra pages. Postage No designs please, although you can make feature so much that we’ve printed a costs have also risen since we suggestions for simple symbols to very limited edition of it as an A2 launched 5 years ago. This means accompany wording. poster. If you’d like one, send us a AuKids will now be £15 for an annual Winners will be announced in our January cheque for £9.70 (includes P&P) subscription. Still reasonable, we issue. The closing date is December 1 st payable to AuKids magazine to AuKids, reckon – and we hope you feel it’s 2013. Send them to [email protected] PO Box 259, Cheadle, Cheshire SK8 worth it. Current subscribers won’t be stating clearly in the subject header ‘kids 9BE. If you want to avoid postage charged any extra until renewal. So if slogan’ or ‘adults slogan’. costs and collect one from our office in you’re one of the organised ones who Cheadle, Cheshire, the price is £6.50 bought themselves a three-year and e-mail [email protected] to subscription recently, you’re allowed to arrange collection. Only 25 copies feel quite smug. available so first come, first served! Time Specialist Support You probably don’t need reminding Write your address and phone number is Recruiting in Manchester and Chester! that AuKids is not-for-profit and the on the back of the cheque plus the subscription fee just covers our costs. word ‘poster’ at top left hand side of In other news, we’d just like to thank all the envelope. We specialise in supporting and befriending of you who wrote to tell us how much youngsters with autism spectrum conditions. you liked the Autism Sundae Dessert Debby feature. We were quite overwhelmed Tori & with your responses. e-mail: [email protected] One reader wrote: ‘I am going to keep Do you have: this article in my bag and produce it as often as possible. It is a work of pure COMPETITION WINNERS ✓Experience in special needs? genius. I have read so many books and FROM ISSUE 20: blogs etc. but this is the best and most Katherine Gibbinson, Essex; Jo ✓Oodles of enthusiasm? simplified version I have ever read. Sampson, Bristol; Jill Hampson, Thank you thank you thank you!’ Liverpool; Afshin Tirmizi, ✓A passion for autism? Basingstoke; Nicola Naylor, We particularly liked the ‘work of pure Warwickshire; Sophie Page, Hatfield ✓Good organisation skills? genius’ bit. and Batsheva Kaye, Manchester. ✓Over 12 hours spare a month? Whilst the products and services advertised EDITORS: in AuKids are recommended to us by Tori Houghton and Debby Elley readers, we are not an industry inspector or PHOTOGRAPHY: regulator. We advise readers to seek Front cover photo taken by Nikki Sheppard, independent advice from regulatory bodies keen amateur photographer and Dad to our It could be you! before signing up with a new service front cover star Will. To see more of Nik’s provider and to check that products and photography go to: www.facebook.com/ equipment meet with industry standards. mowburntphotography The opinions expressed in AuKids PRINTING: magazine are those of the contributor. R and P Printers, Dukinfield Please seek medical advice before GRAPHIC DESIGN: Tel: 0161 425 3570 embarking on any therapy or behaviour Email: [email protected] intervention. All articles are copyright Web: www.time-specialist-support.com AuKids. www.periscopestudios.co.uk Time Specialist Support is an equal opportunities employer AuKids is published by AuKids Limited, PO Box 259, Cheadle, Cheshire SK8 9BE, company number 7413180.

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. N.B. From January 1 st 2014, AuKids is £15 annually. 2 AuKids magazine, Autumn 2013 Letter from the Editors A Star Prize Worth £150! RReevviieewwss A Lifetime of Laughing of topics. Some of the stories are no more and Loving with Autism than a few lines long, which makes this book a - New and Revisited good coffee table addition. Mum Vanessa Bell recognised a need Stories That Will Warm At times it depends on how cheesy you like for resources and decided to do and Inspire You your reading, so I recommend adding a good something about it herself. Her By R. Wayne Gilpin ole pinch of salt here and there, but in other company Starpacks ( www.starpacks. Published by Sensory world places it promises to make you laugh and cry co.uk ) sells fun SEN educational packs – imprint of Future Horizons in equal measure. to inspire happy learning. £11.50 • ISBN 9781935274643 This assortment of heart-warming tales will She told us: ‘When my eldest son was remind you that you are not alone, and that This is a collection of short stories and much younger I designed some children with autism do say the funniest anecdotes compiled by the founder of an things. Despite this being one of many similar resources to help him. I was a nurse American publishing company that specialises with a little teaching experience at the books on the market, it provides a little light in autism resources. He is also father of an relief among some of the more scary time. His hospital consultant liked autistic son. them so much that the unit wanted to information that may be thrust upon you. use them for children with autism, The book in its entirety is a collection of Laura Keeling ADHD and communication difficulties’. memories from a wide range of parents, plus Speech and Language Therapist. the occasional professional, covering a variety Eventually, the kits were licensed to a leading educational company and Vanessa now supplies schools, parents and professionals. Now we’re giving The Reason I Jump a truly remarkable achievement and a one lucky reader captivating read. The author used an alphabet ensory By Naoki Higashida, grid, pointing to individual letters, to write it. the chance to S pop-up translated by K. A. Yoshida win a black tent and David Mitchell The book is divided into short chapters that sensory Published by Sceptre answer popular questions such as ‘Why don’t pop-up tent £12.99 you make eye contact when you are talking?’ (size 142cm ISBN 9781444776751 to ‘Why do you like spinning?’ The book gives squared), a unique insight into one individual’s worth £95! The Reason I Jump , which has become experiences of the sensory world and the daily Not only that, something of a phenomenon since its challenges with which he is faced. Its author but it will arrive publication, is written in the first person by offers advice on how to best support complete with Starpacks’ Naoki Higashida, a teenager from Japan with individuals with autism through these Calming and Soothing light-up kit to go a diagnosis of autism. obstacles and emphasises the importance of people’s understanding and patience in giving inside, worth £59.99! The kit comprises The book’s introduction states that Naoki’s him hope. a soft glow colour change egg, fibre autism made dictation out of the question and optic fountain, knobbly sensory light computers too distracting. It also says that his Both beautifully written and engaging, ball and light-up kaleidoscope. autism is severe enough to make spoken The Reason I Jump makes for an easy read, language pretty much impossible, even now. perfect for parents with little extra time to Naoki himself reports that ‘sometimes I spare. It is important to remember, however, Calming manage a few words - but even these can that this is the perspective of one individual hing and Soot come out the complete opposite of what I and although much of the content may apply kit light-up want to say!’. to our young people, one size does not fit all. It’s these limitations – and Naoki’s young age Hannah Venton-Platz (he was just 13 when he wrote it) that make it Assistant Psychologist.

Pronouns with Splingo The Speech and Language Store For both iPhone and iPad • £1.99 Flushed with the success of Splingo’s Language Universe, which earned its makers AuKids’ prestigious reader award for Best App, comes their latest launch – Pronouns with Splingo. The All you have to do is hunt for Speech and Language Store, (once named Talking Starpacks’ cute star logo in this Wizard) have created an equally appealing game to help children of all levels understand pronouns. A FREE SPLINGO issue. Then write to IN PRONOUNS APP! [email protected] Once again, it is beautifully flexible and the W amount of pronouns, and the particular ones you telling us where it is, with Simply ‘Like’ The Speech and want to practise, can be selected and gradually ‘Star’ in the subject header Language Store on Facebook and raised in number. If you select objects and give and your name and address post the comment ‘AuKids readers them to the right people, you earn Splingo’s alongside your answer. love Splingo!’ One winner will be delighted reactions as well as the reward of being selected at random and sent a code Closing date November 30 th 2013. able to personalise your virtual bedroom with to download the app for Editors’ decision is final. No cash groovy accessories. This really is a super game free. Closing date 30 th alternative. The winner’s name will be that makes education so fun they won’t even November 2013. realise they’re learning! published in our January issue. Debby Elley ! luck Good AuKids magazine, Autumn 2013 3 Labelled With Love ONED OUT 3. Z quick glance at any of the signs on the left tells you a A load of information in far less time than it would take to explain it. That’s why AuKids is such a visual magazine. We Give clues in the home to ease confusion over are programmed to respond to visual signals and yet we are purpose. Use different colour iPad covers to help a socialised to be almost exclusively listeners. Those who find child to grasp whether you are using it for play or education;as; make it difficult to process a collection of sounds need better keep distracting screen games away from sleep are defined ways of receiving, retaining and relaying information. Here’s a ‘chill out zone’ in a corner of a room thatcompleting is clearly where we as parents can help our kids, and there’s a system for that purpose and have a set place for that can help us to achieve this - TEACCH. homework, if your child is given some. Division TEACCH started in 1966 as part of the Department The absence of doubt here will create a more nd ng of Psychiatry of the School of Medicine at the University of predictable home life which will help to settle a North Carolina in the USA. One of its many aims is to modify comfort a child. Having such stability, rather than maki them more inflexible, will give them enough confidence a child’s environment, giving greater structure and and security to improve overall flexibility. predictability when it comes to common tasks. This enables them to filter out the ‘fuzz’ and to learn better, using their visual strengths whilst addressing their weaknesses. The techniques common to TEACCH are minor adaptations 4. UNDERCOVER ACT that can help our kids to function more happily in the real world and make a big difference to their understanding of Cover up distracting and irrelevant their surroundings. activities/objects. Put a cover over the computer when it’s not in use, put toys away after they’re Earlier this year, Tori attended a TEACCH course hosted by finished with. the Together Trust in Cheadle, Cheshire. It was presented A tidy house really does equal a tidy mind when by Professor Gary Mesibov, former director of Division it comes to autism! Problems with executive TEACCH. Some of the ideas suggested to help kids cope functioning can mean that staying on task is difficult with a range of demands could be put to great use at home. for an autistic child. Reducing distractions, both at These are what she focused on, and here are some of her home and school, greatly helps kids to focus. favourites. Many of the examples given were classroom related, so we’ve translated the ideas for the home.

OUR KEY: 5. CRACK THE CODE What you can do 2. WH Introduce colour coding systems. ATNE Their toothbrush, their towel and their XT? flannel, for instance, are all red – can they show Show them that they can have independence by finding them when they need What it helps with something ‘later’ by using a to, even if they’re in a different place from usual? NOW and NEXT card. Use Blu- This is a great way of helping a child to Tack® to stick a picture of the increase their flexibility and to problem item under each word when solve for themselves; something may not appropriate. always be in the same place, but if it has This turns a difficult abstract the correct colour on it, it can be found using initiative. concept into a concrete visual and will improve understanding, helping with difficulties that can WITH IT 1. STICK happen (ie. a wobbler) if a child doesn’t understand they’re getting something.when 6. Label drawers and cupboards with Keep photos, pictures and/or written words. it Tog For older children, you can alsoet hcolourer This increases a child’s independence, code different subjects in school. Cover all helps them to make sense of the world science books in green, for instance, plus and gain control over their environment items needed for science so that they are and can improve their problem solving encouraged to gather all ‘green’ items and communication skills. needed for that lesson. This helps with planning and executive functioning, whilst narrowing down the field of possibles and helping them to focus on what’s important.

4 AuKids magazine, Autumn 2013 AL DVD For Autumn Evenings REVE les W o strugg SLO hild wh . 7. small c e holes COMPETITION TIME! s. For a e of th eir focu r up som Limit th ter, cove age of ape sor unting p t a We recently came across Calmer By Nature’s latest ith a sh ith a da stion a w aced w one que a child f al only use DVD, Calmer by the Water . The company creates films For her reve off, or ork, eit e others arts and of the British countryside without intrusive commentary homew sking th work st ugh ma hen the to ime thro show w stickers or music, just natural sounds which allow its audience t bels to include in, oured la n even to write to escape. Calmer by the Water is the third film by col . You ca or them it ends space f cted to Barry Wheelock who, after a period of severe stress in when ount of ’t expe the am hey aren indicate rstand t his own life, began to film rare moments in nature. This ey unde that th the kindled a passion for wildlife that has enabled him to so ! reduce e reams an really writ dings c th too help others including those with autism, who can use and en lmed wi innings verwhe tasks the films as a calming and coping strategy. Calmer by lear beg when o makes C ld faces tructure the Water is available from www.calmerbynature.com ic a chi eating s rk pan tion. Cr ild to wo informa lps a ch for £16 plus p&p. You can watch a sample clip at much also he sier and www.calmerbynature.com/products.html a lot ea tically. systema WIN IT! 9 AuKids has copies of Calmer by 8. . Switc RING THE h and the Water to give away to three Cha Swa lucky winners. Just e-mail us your nge t p tas he na name and address, with the word CHANGES so k. G ture rting et the of a obje m us ‘calm’ in the subject header, to shap cts a ed to Highlight changes. e, the ccord [email protected], no later so t n sw ing t At school hey ap th o th , a timetable ite are s e tas than November 30 2013. ms b orting k change could be T y col the s hink our in ame highlighted in another abou stead expla t how . ! colour; at home, this in thi you’ Good luc k a lit s visu d c tle ex ally, Our usual terms and conditions apply. Winners’ details will be sent directly ould work on a Th ampl by us is is g e or a ing to Calmer by Nature so that they can send out your prize. calendar. th enera pictu ing fo lly a re. D r neu good This helps a child t o so rotyp o meth icals, way ing in too! predict the future, to wo a dif cell rk th feren making it less stressful, s. e little t grey and therefore gives T them ex his re tra control over ally i flexib ncrea Together for autism their environment. ility o ses f thou ght. To support your child’s journey through childhood into adulthood our ASC specialist services include: ™ Inscape House School ™step-up course at Bridge College ™ 10. The ™community support and short breaks ™shared care Day in Pictu and full-time residential care. Use visu res al schedule Together we work across the autism spectrum from birth to tick o s and enco ff each act urage your adulthood. We provide independent diagnostic and specialist ivity when i child to t’s finished. assessment, speech and occupational therapy assessment and This hel ps to create pred a more stru delivery. We also provide consultancy and training. ictable envi ctured and u ronment tha nderstand w t will help y hat’s comi our child to way, incr ng next in a easing secu really con scho rity. Great crete ol, particula for home a rly when th nd e routine is n’t familiar. Further Reading • A complete listing of research papers, assessment tools, publications and video material is available from the TEACCH website: www.teacch.com/ publications.html To find out more please contact us • The TEACCH Approach to Autism Spectrum www.togethertrust.org.uk/services/autism Disorders (Issues in Clinical Child Psychology) by facebook.com/SupportTogetherTrust twitter.com/TogetherTrust Gary B. Mesibov, Victoria Shea and Eric Schopler, [email protected] available from Amazon at £41.35 or on Kindle £31.01 • Visual Supports for Visual Thinkers – Practical Ideas for Students with ASD and other special needs Registered charity number 209782 by Lisa Rogers published by JKP Paperback £29.99 YWh[š[ZkYWj_edšikffehjši_dY['.-& 121215 ISBN 9781849059459

AuKids magazine, Autumn 2013 5 Ask the Experts

Some children with autism have ‘‘ rituals that they feel compelled to act upon. These may involve words or actions. Why do they do it and should you worry? We ask our experts... ’’ * See bottom of feature

• Get real curious about it. Ask stop a behaviour once it starts, questions. Investigate. Test so it is repeated, or that things out e.g. If I do this let’s individuals find it difficult to start just see if that will turn out the something new by generating a way I think it will... different behaviour in response to the same situation. • Distract ourselves. Find something that we recognise Dr. Jane Waite and Ritualistic behaviours should and bury our head in it! Prof. Chris Oliver only be reduced if they are having an impact on an You’ll be familiar with all of these The Cerebra Centre for individual’s well-being or ability Neurodevelopmental Disorders, in yourself, but especially in your to do other activities that are young person/s on the spectrum. University of Birmingham Chris Barson important. When trying to So where do the ‘rituals’ fit in reduce these behaviours, focus RNMH, GWCMD Dip Many children with an Autism with all this? What sense can we on limiting the behaviour rather Spectrum Condition (ASC) Chris is the founder of training make of them? Well, if the future than stopping it completely. company Positive About Autism engage in ritualistic repetitive is unknown territory to you Increasing structure and using www.positiveaboutautism.co.uk behaviours. These (because of the difficulty you visual supports such as behaviours vary and Prior to that, he was External Training have with imagining timetables, photos and symbols examples are lining Manager with the National Autistic things) then you could can be effective, as can setting up objects, Society and still delivers training for build a bridge to that a limits to the number of times an the charity. He is a contributing Mine has turning around future made out of ritual’ individual engages in the author to The Autism Spectrum in the ger clicking three times, 21st Century: Exploring Psychology, stuff that you know ‘fin y behaviour on each occasion. es regularl hand flapping Biology and Practice and trust. that he do This number can be gradually anxious ... and preferring Jessica Kingsley Press 2010 ecially if reduced over time. Some These would be like and esp n. to do the same tain patter children and adults with ASC stepping stones all in a cer activities at the The future is uncertain. That’s for ana Mine, might benefit from increasing made out of past Amanda H same time of sure! However, if you are a kid der their self-regulation skills by events and actions. Rea day or place. with autism that’s especially true. gaining insight into their rituals Trouble is, each time Most folk have a kind of inbuilt There are a number and learning strategies to put you get to the future, you guidance system that helps us of reasons why these the brakes on their behaviours. realise you are still staring into deal with the big “What happens behaviours occur. One These strategies are more likely a void you can’t handle. So you next?” question with a deal of reason is that they might to be successful if delivered lay another stepping stone of confidence. We can’t exactly see regulate anxiety or levels of with support from a Clinical familiarity and take your next into the future, but certain brain stimulation by being a Psychologist who will develop a step... functions make us feel like we predictable and ‘safe’ activity. personalised intervention plan. can. These stones are often what In addition, Kate Woodcock, neurotypical folk refer to in In kids with ASC, this guidance Caroline Richards and Jane people with autism as ‘rituals’. system is less effective. Hence Waite from the Cerebra Centre for Neurodevelopmental the future question - what the The answer? Well I’d say they are Bobby Disorders at the king future might look like and how it best left alone. Work around s a little spea University of ha at he will affect me - goes unanswered. them. Make the future less of mantra th ritual, a sort he’s Birmingham, have ether or not And all human beings have a unknown by making it more see- o himself wh t. found evidence chants t mfort blanke problem with unanswered able and concrete. Don’t just tell e a verbal co that these essed. It’s lik e sniffs, he questions. We just can’t have - show. Work on ‘staying calm’, str er rituals – h behaviours might as many oth ear to that. ‘not freaking out’ and ‘asking for Bobby h ll these app lls his eyes. A , occur because of oughs, he ro oves on from assistance’ skills. All these will c eventually m The human response to this ‘not problems with bits which he e very cute make the need for rituals a bit be ha hing else. On knowing’ goes in several, cognitive s with somet o-Go smaller. but replace e up all his G interchangeable directions. We ad was to lin processes known al he once h e apart in a have options: ritu ured distanc Of course, human beings are as executive cters a meas trangely chara 0 of them. S never simple and ‘rituals’ will functions. tion, about 9 • Freak out! We’ve all done this block forma m too much have many underlying causes. So Difficulties with n’t bother hi when we are sent into a tailspin nough it did er. play detective and try things. But e ked them ov by not knowing what the heck executive functions n Alec knoc whe uKids take it one step at a time. mean that individuals , co-editor A is going on. Debby Elley might find it harder to magazine 6 AuKids magazine, Autumn 2013 rituals. If the rituals aren’t used less frequently or are used more Ou r son has a frequently, something else may ritual Jam of matching ie has a ba be going on. It may be c eve th haracters t ry single da necessary to consult o other d y and has characters one her wh like there ole life. We professionals who are conn is some never sto have ection betw pped her w knowledgeable in Obsessive- een them as s ashing her Likes us to all! he always hair Compulsive Disorder (OCD). repeat wh gets it wet a wh at he says but every nyway… A little over one-third of ile matchin day she ge g too! He has ts in the ba very ve is not a play and th, people with ASC show the rbal so ha without fai rd for us to “Can I get m l shouts clinical symptoms of OCD. understan y hair wet? d, but it alw saying ” We starte ma ays when she g d The next step for helping with kes him fe “You ot into the Heather MacKenzie el better. can get yo bath Mr ur hair wet PhD rituals that are not part of OCD is s Jude, Re as thoug ,” but it’s ader h she does to help the person become aware n’t hear us. Lorraine Sc Speech and Language Pathologist of the behaviour and understand ott Young, Reade and Founder of the SPARK* that they have the ability to r programme (Self Regulation Program of Awareness and Resilience in Kids) control it. For example, say to the child, “Sometimes, I notice that your fingers want to twirl string Autism spectrum conditions are around and around.” The critical described as including restrictive, thing to notice in the statement is repetitive and stereotyped that the ‘fingers’ are identified as misunderstood; you get told off behaviour, interests and activities. doing the action – it’s imperative for behaving in ways that seem They may include preoccupation that we don’t say it’s the child natural to you; people seem to with certain interests, adherence who’s engaging in this ritual lie to you all the time...all of to routines or rituals and because he’s the ‘command these are common experiences repetitive motor mannerisms like central’ that we want to appeal for the autistic individual. finger or hand flapping. These all to. So - being perfectly sensible fall under the definition of Then we have to indicate why it’s and logical, the autistic person ‘rituals’: they are repetitive, rule- sets up systems to combat a governed and inflexible important to change that Luke Beardon behaviour: BA (Hons) PG Cert (Autism) lack of global stability - they behaviours. start to rely on other things less The use of rituals is, for the most “I know that it helps your brain Luke is a senior lecturer in chaotic, i.e. things that remain part, an adaptive response. For and body feel calmer but other autism at The Autism Centre, the same - or, things in their people might think it’s weird and Sheffield Hallam University, example, the person begins to speaker and author. control. might not want to be your friend.” feel anxious or distressed so All of a sudden, the individual See how they respond. If they While not exclusively the case adopts a familiar routine. The can focus their attention on still engage in the process, move (when it comes to autism it familiar routine provides stability rituals that are comforting and on to introducing a modification never is, is it?!!!) it is very often and a degree of comfort. Rituals secure, instead of having to to the time and/or place for the that the reason behind ritualistic can give the person a sense of engage in chaos and confusion; ritual. behaviour is directly related certainty, predictability as well as the wonderful sameness of the to what I call ‘global pleasure. Now for the modification patterns decrease the horrible stability’ - or, lack step: “You could help impact that unpredictability and They can also be ‘just part of As a child I your fingers learn al of it. Imagine a what you usually do’ – old habits ways use to change have on the person; run around world of chaos that no longer have any particular when it’s okay to the nurs they can engage in isolation ery and prim - all the function. Difficulties with twirl the string.” school p ary without having to involve other layground o things that When, where ‘Gro bsessed in inhibitory control and cognitive undhog Da a people. All of a sudden, life and how you y’ sort of co most people flexibility, two of the main engrossed ncept, looks a lot better... in my own take for executive functions, can make it proceed imagery world of . I use to al granted all In terms of concern - if routines difficult for the person to stop the depends on p ways over- hrases to n repeat of a sudden are getting more and more the child. I’ve ames of sup old habits and start or replace I creat erheroes worked with ed constant can no complex, rigid, or the person is new behaviours. ly, as I often played o longer be increasingly reliant on them, it children where n my own. Something we often forget, Graeme Cr relied upon. would suggest that their global the ritual is oton, found however, is that rituals and Pr er of Communication stability levels are dangerously important to oject Aspie repetitive behaviour are seen in maintaining a state of breaks down; low. It is always a good idea to all people, not just those with calm so you find covert other people’s support the individual to have a ASC. When a ritual interferes ways of doing it; for behaviour makes no better understanding of the significantly with a child’s or example, the string could be in sense; the sensory world is world around them - and the adult’s ability to learn and engage the child’s pocket. You might also totally different for you greater that understanding, the in daily activities, or when it limit it to home and, ultimately, to compared to those around you; less need the individual will makes them stand out socially, it their bedroom. socially you have no idea how have to develop rituals as can be a concern. Both of these to behave; things you say are coping mechanisms. issues of interfering with life and The important part of this step is social alienation are important. to engage the child in being the ‘commander’ of his own body In this case, a good first step is and brain and in deciding when Do you have a question for Ask the Experts? to look at what function the and where he can let loose with E-mail us at [email protected] behaviour may play in the his rituals. ? person’s life. If it helps to calm and centre them, you’ll want to These steps take time *Debby’s son Bobby lined up Go-Go characters in front know why they’re feeling anxiety and a great deal of of their ‘cinema’. or distress. This may prompt you patience. They can’t to improve the structure in the need to be My son the street person’s life and add visual introduced to walk down The views reflected in these columns are the panel’s personal g every opinions and may not be relevant to all children with an autism support so they more clearly the child matter- ut touchin witho e spectrum condition. Parents should embark on intervention of-factly and as r. Very tim understand rules, expectations, front doo programmes only after following the advice of their child’s something that and schedules, etc. consuming paediatrician an d/ or occupational therapist. you and they can nt! nconvenie After these are in place, observe work out together. i eader what difference they make to the R AuKids magazine, Autumn 2013 7 evidence-based Science research - there is a large amount of bad science, based on speculation and Fiction anecdote. Geneticist Dr Neil Walsh and & Fact Neuroscientist Dr Elisabeth Hurley The rate of autism appears to be recognised this and dramatically increasing and now last year published it seems that everywhere you The Good and Bad look there is a new ‘scientific’ remedy. Science of Autism , a Unless you’re a research scientist, making scientific guide to navigating the swamp sense of hundreds of autism studies of information (and misinformation) in the (when you’re also emotionally involved in popular media. their outcomes) is near impossible. We asked the authors to give us some Alongside the good autism science – the straight-talk on some of the big questions careful accumulation of genetic and other regarding the science of autism.

What do you think is thalidomide and valproic acid extremely unlikely that a gene the most common during pregnancy and if the mother therapy for autism will be misconception that suffers from rubella during developed. people have regarding pregnancy. There are a number of the science of autism? large scale studies currently Why is autism underway to look at other becoming so common? At the moment it’s the assumption environmental risk factors. Some that autism can be cured. Because factors that have so far been Autism was originally autism is a developmental disorder associated with autism include thought to be rare, only occurring with a strong genetic component time of conception, parental age, in about 4 cases in 10,000 children. (proven through numerous studies and whether or not the mother Over the last 20 years this estimate since the 1970s), it has no cure. took prenatal vitamins (which may has increased and recent studies It is a hugely complex condition have reported rates of autism of have a beneficial role in reducing THIS GUY'S A MODEL. THAT and numerous genes have been about 1.1%. the risk of autism). SCOPE HAS NEVER BEEN USED. associated with it, some of which STETHO Research in this area is There are two possible are involved in the development of complicated, however, as it also explanations. Firstly it could be due the nervous system at an early age. seems that there is a strong to a change in environmental So far, the genetic bases of 10- interaction between genes and conditions that we don’t yet know 20% of cases of autism have been the environment. about, although the vaccination identified. theory has long been discredited. Secondly, it could be mostly or In principle, could the What about the other entirely due to the changes in the genetic causes of autism 80% of autism way that autism is defined and be eliminated with future cases? identified, and there is growing technology? evidence that this is the case. In many of these cases, a genetic The genetic component of autism association with autism has also The broadening of the definition is very complicated: there are been established, but the specific of autism to include Asperger’s potentially hundreds of genes that genes involved have not yet been means that there is now a wider have a role in determining autism, identified. New genes associated collection of symptoms available but what they contribute and how THIS WOMAN IS ALSO A MODE with autism are being identified on for diagnosis, including subtler L. THAT they interact is not well IS CREME DE MENTHE SHE'S a regular basis. This is an area of traits not previously considered to STIRRING. understood. Medical treatments research that is still growing and it be strict signs of autism. that manipulate a patient’s genetics will likely be many years before we Because of that, some kids who with the aim of treating a genetic have a full picture of the genetics would have been diagnosed in the disease (known as ‘gene therapy’) of autism. Genetics isn’t the full past as having language disorders are at an extremely early stage. story, however. and other conditions are now The few that do exist only treat diagnosed with autism. This has conditions with a very simple What’s the current been shown through an American genetic basis, such as a single study which indicated that the thinking on environmental gene that is defective, and are prevalence of other disabilities was causes of autism? associated with major risks. decreasing alongside the rise of Considering the large number of Although it is now clear that autism diagnoses. genes involved in autism, their genetics plays an important role, complex interactions and poorly If you look at the prevalence of it is likely that there are also some understood interactions, and the autism among young and old age environmental factors which may fact that the changes that lead groups using exactly the same contribute to autism. Known to autism occur at an early diagnosis methods, a genuine rise environmental factors associated developmental stage, it is in autism would be reflected in AND SHE'S NOT EVEN TRYING with autism include exposure to

8 AuKids magazine, Autumn 2013 larger numbers of autism in In contrast, the practitioners to always work with a the younger group. In fact a of pseudoscience can be professional dietician when About the large-scale survey in 2009 by really resistant to change making changes to your the NHS and the University and are often so convinced child’s diet. Without of Leicester found that the that their ideas are correct professional help, you could Authors rates were the same when that no amount of contrary accidently remove something you applied the same evidence can convince them which was helping your child Geneticist Dr Neil diagnosis criteria. otherwise. and, although you may see Walsh has studied In other words, it is our improvements to start with, the genetic basis changing methods of We have read so your child could get worse of evolutionary diagnosis that appear to and you may not be able much about adaptation using account for much of this rise. to identify why. A dietician cutting edge molecular biomedical would ensure that your Other factors, like better interventions for biology technologies. awareness in the medical child’s nutritional needs He is currently employed as a Scientific autism – what are community and earlier are met. Writer in a medical communications agency, your thoughts? detections as well as service and in his previous academic position at the improvements can account We are extremely sceptical of What tips would University of Cambridge he has presented for the increased numbers. biomedical interventions for you give parents his research at major international molecular autism. Interventions should who are thinking biology conferences. How can I tell which make sense. You should be about adopting a able to understand how and claims are worth new intervention for Neuroscientist Dr Elisabeth why an intervention works. Hurley has specialised in looking at? For many biomedical their child? Good science involves interventions, the reasons You should always ask the effect of light on the thinking about a why they are claimed to work yourself two questions: Is development of the body possible reason for a don’t make sense when you there any research that says clock. Following her problem, predicting what think about what we know it works? Is it safe? Our interest in autism, she is would be observed if that about autism. advice is always to check now the research officer at Autism West Midlands, reasoning were to be correct This sets alarms bells ringing whether there is research contributing to the most and then testing your for us. It can be very hard for that backs up the recent autism research. predictions through careful parents to do their own intervention. This should be experimentation and research about interventions, published in a scientific comparisons. the information out there can journal, which means it will If your results don’t support be very confusing. have been peer-reviewed. your proposed reason, it Researchautism.net has a You also want to check that must be discarded or comprehensive database there are a few studies which modified and tested again. of almost all interventions, show that it works, published Further Information If they do, then they should including biomedical by different groups. be replicated multiple times interventions, and can help It can be quite hard to get The Good and Bad to be sure, ideally by parents sort through some this information. If you are independent research of the confusing information unsure about an intervention, Science of Autism groups. they receive. See below right you shouldn’t be afraid to by Dr Neil Walsh and for details . ask. Autism West Midlands Dr Elisabeth Hurley is aims to help people make published by Autism West Midlands, price The practitioners of Many parents also try sense of the various interventions for autism. £7, available from special diets. Does pseudoscience can be Other autism charities might shop.autismwest the science support also be able to help. Make midlands.org.uk. really resistant to any of these? sure you get independent We have three copies of the change and are often advice from someone who A Currently, the evidence IN book to give away. Write to does not stand to profit from W so convinced that their supporting these diets is not ! us at [email protected] people using the intervention PY very strong. More studies are CO with your name and address, ideas are correct that you are considering, to needed and they need to be with ‘science’ in the header. repeated in independent ensure that you get an no amount of contrary Winners will be chosen at random after the groups, and preferably in unbiased opinion. closing date of November 30 th . evidence can convince different countries. Many them otherwise. parents use these diets and have seen a positive effect. Our advice would be Bad Science by Ben In order for scientific findings Goldacre. Guardian to be published they must columnist Ben pass a strict process of peer- Goldacre’s wise and review, where other experts witty bestseller, in the field critique and TISTS... shortlisted for the evaluate the results. Once SCIEN e Samuel Johnson Prize, GOOD to prov lifts the lid on quack published, studies become and try theory doctors, flaky available to the broader with a try to scientific community, which 't start ory and statistics, scaremongering don th a the y can then critique them start wi a theor journalists and evil pharmaceutical it; they disprove further. prove or imply corporations. The Sunday Times Top Ten ve it. To eory is s One consequence of the dispro good th bestseller. Published by Harper Perennial ssible. A usly and scientific method is that our is impo d rigoro and available from Amazon at £6.74 (price 100% questione t. understanding of the world is been pports i at going to publishing). that has e still su continually revised and one evidenc lance of with an updated. It means that the ba s start yet researcher port alternative possible science, ce to sup Researchautism.net sifts good science In bad r eviden from the bad. For each intervention, it has explanations for problems n look fo not, nd the rect or a rating telling you how much research are always considered and idea a ea is cor their id . backs it up. It also tells you whether there evaluated against the Whether justify it available evidence. it. ay to is any risk to health. find a w they will AuKids magazine, Autumn 2013 9 1. Making Your • The BBC’s brilliant interactive Dongle cartoon is available HoMe inTerneT under the site’s activity centre. Safe • The site has an SEN section for parents and teachers, Tips from showing Internet safety rules CEOP: in BSL and Widgit symbols: www.childnet.com/resources/kn • Install Internet filters ow-it-all-for-teachers-sen Internet filters are software • Use the following Social which are designed to control Story TM , written by SEN Assist, what content a user can see. It to help your child understand is used to restrict material what a password is for. Fill in the delivered over the web. For gaps with your child’s details to advice, go to Get Netwise at make it more meaningful. www.kids.getnetwise.org/tools/ which supports parents in choosing tools to filter content. It also identifies child friendly web browsers and software that can contribute to keeping children safe. Social • Install child-friendly Story he internet can be a fabulous place for kids browsers T with autism, giving them an opportunity to Child-friendly browsers socialise in a non-intimidating environment. It can automatically filter results that are adult in content and protect also be a dangerous place; autistic kids tend to be against viruses. Anti-virus About Using A Password visual thinkers and often love technology, but their software should be installed. Get on the Computer autism causes them to be even more vulnerable Netwise can help and Fayaz I like using the computer. online than other kids. Put it together and you recommends KidSurf – Internet Sometimes I play games like browser software designed have a strong case for being extra-vigilant. especially for children of 3-8 years old. It’s a free download When I play games, I use a and only allows children to made up name like Fayaz Malik is “Internet-learning access sites online that have a CEOP (Child provides been pre-approved. Exploitation and opportunities for I do not give any information Online Protection learning through • Protection against about myself like the name Centre) repetition that viruses of my school or address. People do not need to know Ambassador supports children Microsoft provides excellent about me to play games. based at who take longer to free antivirus software at I do not need to know about Moorside learn new things and windows.microsoft.com/mse Primary School embeds the learning the people I am playing the in Tameside. they do in the • Install parental games with either. classroom by guidance locks on He agrees that Fayaz Malik If I am playing a game and undertaking activities the Internet can popular sites I get asked for information as many times as be a fantastic place for autistic Websites designed for a range about myself I should tell a they need to, in order to kids for a number of reasons: of age groups that contain adult grown up I trust. consolidate their learning.” or disturbing content should “Young people with autism and I might have a password to have a capacity for blocking other communication disorders The visual aspect of learning is log in to a game and I must certain content using a pin code. often find Internet really important for autistic keep passwords secret. communication easier than children, who tend to process Normally this capacity can be face to face communication. images easier than spoken found by entering the A password is a bit like the On the Internet, people’s use communication. help/guidance/support/safety code that can be used to of consistent and easily centre pages from the home open a safe. The password But…we all know the risks, recognisable emoticons replaces page. stops other people using my which can be considerably the need to decode people’s account and getting details increased for a child with body language, facial about me. I must not tell autism. “The risks for all children expressions and vocal tone that 2. keeping anyone the password except can be more profound for young can be problematic in personal my parents or people who I people with a learning disability auTiSTic kidS communications.” know are there to help me as a result of increased in THe know like a carer or teacher. That’s not to say it should vulnerability, tendencies towards replace real life communication, obsessive compulsive behaviour • Child Net If I’m not sure I can always of course, and the need to and social naivety. Pupils with International ask a grown up I trust. I want practise ‘real’ social skills. But Special Educational Needs are (www.childnet.com) to be safe and I like going imagine how great it must be for 16% more likely to be is a not for profit on the computer. I know it them to be able to relax in a persistently cyber bullied over a organisation working is important to keep my social setting when ordinarily it prolonged period of time.” with others to make the information secret and safe can be such a strain. There are when I am playing games like That’s a good reason to get in internet a safe place for children. educational benefits, too, there early, then. Here’s how: Its Know-IT-All section is according to Fayaz: fantastic and includes a ‘SMART or using the Internet. rules’ video for kids to watch

10 AuKids magazine, Autumn 2013 3. knowing cheap at about £30, but worth furTHer Safe Surfing with Doug its weight in gold as a visual www.disney.co.uk/DisneyOnline wHaT Your tool to show a child how much inforMaTion /Safesurfing is aimed at helping cHiLd’S computer time they have left. young children understand how Fayaz Malik is available to give to stay safe online featuring doing free internet safety training characters from Disney’s sessions and advice for groups cartoon Doug. • Listen when of parents. You may need to your child talks cover his travel charges. Woogi World about computer trends. Contact him at f.malik@ www.woogiworld.com allows moorside.tameside.sch.uk primary aged children to play • Ask other parents what they games, learn about basic Fayaz wrote an excellent think of a game before installing Internet principles and chat document with detail on it; better that they don’t get into safely. it to start with than get addicted everything you need to know and then face a crackdown! about techno safety, including That’s Not Cool help with cyber bullying, www.thatsnotcool.com gives • Keep the computer in a family restrictions for TV and mobile the tools to help young people area with the screen pointing internet safety. It also has a think about what is, or is not, towards the room. 6) Do not switch the computer great section for SEN and okay in their digital autism adaptations and tools. • Every so often, sit and play off as the timer goes. This relationships. Aimed at young The PDF is now available to with your child on each would be unfair and guarantees people 11+. download at www.aukids.co.uk computer game they use so a bad reaction. Wait till the next convenient breaking point – if that you’re aware of the type of SEN Assist creates award- interactions they’re having. you respect your child’s need to finish off what they’re doing winning CD-ROM games: • Listen to your child if they they’ll be a lot more respectful www.senassist.com STAY tend to repeat what they’ve of your boundaries. Thinkuknow heard verbatim; be alert for the AFE! www.thinkyouknow.co.uk by S clues that something CEOP has a sing-along safety inappropriate may have been 5. recogniSing video and a wide variety of picked up from a game. Too MucH! activities and resources. • Adopt a blame free tone when asking them where they heard Rather than Super Club Plus something. dictating, it’s www.scplus.com/d/who-are-we better to help is a paid for, safe, children’s kids to recognise networking site. 4. STaYing Sane their own body’s signs that they’ve had too much Tips for time on screens. Here’s a list managing that Debby compiled with her computer time son Bobby and keeps handy compiled in when it’s time for a reminder. collaboration with SEN Although I love my Assist: games, I need to stop now because… 1) Try to create a cut-off time for technology in the evening so • I notice after an hour that my that your child has at least a brain becomes so fixed that I half hour period of quiet reading can’t think of anything else, before bedtime and isn’t over- which means my brain needs a stimulated when it’s time to go ‘break’ to sleep. • Too much screen time can 2) Create a colourful ‘computer’ make my eyes tired timetable for the week showing the times that they are allowed • My brain can become too to be online every day. This ‘busy’ with thoughts of the visual reminder will help them to game, not leaving room for recognise and expect that they anything else have a daily limit. • Brains need time to recharge 3) Try to avoid the discovery of just like computer consoles do ‘YouTube’ or games sites with • Brains need a healthy never ending links. Choose balanced diet just like bodies ones with a clear end so the do – time to play on the child can prepare. computer, time to solve 4) Make an agreement before problems and time to sleep. the child goes on the computer Brains also like fresh air! about how long they will have • I start to feel a little crazy if and giving them a visual I have too much screens, my reminder of this. head goes hot 5) Use a timer such as Special • I can forget that there are Direct’s audible Time Timer other things I really like to do, (www.specialdirect.com). Not until I do them

AuKids magazine, Autumn 2013 11 ALEC BOBBY The Last Word By Debby Elley, journalist and mum of twins with autism.

Nice Toy, Playskool Busy Shame About Ball Popper Hugh Martin the Age Range He flaps his hands and stamps his feet My twins were five when we started and spins around both ways AuKids. Now they’re nine, so the He’ll crash and smash his way through things nature of my contribution to these My furniture’s seen better days columns is changing. I’ve started to TOP OF THE POPS: look back on your behalf and think Alec used to love this – why He’ll bite and scratch to reach his goal about the things that bothered me care about the baby on the box? which were - in hindsight - self- and war wounds I have plenty generated tortures. But when he’s out, even for a short while the toy is for a two year-old, this The house is eerily empty On the run up to Christmas, it was age doesn’t mean that your child has a appropriate toys. When Alec was mental age of two. In ordinary He likes his frisbees, balls and swing about six, I’d march through toy children, sensory exploration is a stores, trying to ignore the flashing, stage of development. In kids with In particular In The Night Garden musical, tantalising world of the under- autism, sensory input is a way of He’ll chase me round and round and round - twos aisle. Despite an inner voice balancing their nervous system; I wish I could have a warden telling me that Alec would love it all, nothing to do with age, simply what the toy packaging blared 18+ months their brain requires. and showed a toddler merrily doing Days can be hard and often a battle everything correctly on the front. To Alec’s taste in TV programmes has The nights can be difficult too choose one of these toys would feel matured with age, but he still loves But this is part of every day like admitting defeat. sensory toys and he always will do. I shouldn’t have taken it so personally. With our little Hugh If I succumbed to temptation, it was a painful reminder that Alec was, in play There is a danger when letting our He’s a joy, he’s a treasure - terms, still a baby. Reading the box, pride get in the way of our gut my heart plummeted and landed with decision-making. If we don’t allow our he’s also full of fun a soggy ‘oomph’ next to the woman kids to develop at their own pace He needs 24/7, but gives lots of pleasure with a baby buggy who had picked up using the toys they are drawn to, they He’s my little lad, my autistic son. the same toy. I just didn’t want the are never going to be able to fill in the indignity of buying it, for me or for gaps that they may have missed. by AuKids reader Julie Martin Alec. The fact is, age guidelines on ‘normal’ There’s nothing wrong with what I did toys are irrelevant to kids with special next, choosing toys that Alec would needs. So just ask yourself three like that were age appropriate and questions: what’s the fun value, what’s ‘cool’. His toy garage (largely ignored) the educational value and will it aid was replaced with Hot Wheels – same their development? If it ticks all your principle. The light-up piano was child’s boxes, then quite frankly who Cygnet Health Care swapped with a trendy keyboard and cares what it says on the front? the ball popper game replaced with a P.S. For great tips on preparing for Autism and Asperger’s Syndrome Services marble run. Christmas, look up Issues 2 and 13 on But what was I really worried about? our archive at www.aukids.co.uk Just because in neuro-typical terms (username and password required).

WILLIAM Cover Star SHEPPARD William’s mum Sue says: William was diagnosed with autism at about 3 1/2 and he’s now 5. Mainstream did not work for Specialised services CYGNET’S OTHER AUTISM his reception year so he has moved to a unit within a exclusively designed to meet SERVICES INCLUDE: mainstream school, he is very happy there. William loves Springside South West, trampolining, swimming, play centres, riding bikes and the needs of young people Exeter: Outreach playgrounds. with autistic spectrum support services. He is obsessed with emergency vehicles, cars, Eddie conditions and their families. The Springs Community, Stobart trucks, and buses and trains...he recognises all Kent: Residential care for individuals aged 16-64. the car logos and a lot of models. His favourites are VW OUTREACH SUPPORT: and Audi...he is not impressed that we drive Toyotas! The Springs Unit, For individuals aged 5-64. Harrow: Secure inpatient At home he ‘constructs’ all of the above using toys, FULL TIME AND SHORT BREAK care for adult males with furniture and soft furnishings and loves to dress autism & Asperger’s. up as an Eddie Stobart driver, or a fireman whilst RESIDENTIAL SERVICES: For young people aged 5-17. For more information doing it! He makes the most incredible siren on any of our services and truck noises and has even fooled a PARENT SUPPORT FORUMS: please visit female fire fighter at an open day! He is www.cygnethealth.co.uk a real chatterbox, a charmer, and has a Providing advice, resources and the or call Cygnet Central: wicked sense of humour. He wins chance to meet other parents/carers. 0845 070 4170 over everyone who meets him!

For more information contact Saskia Little, Administrator Think green! Recycle AuKids Tel: 0161 443 4060 Email: [email protected] www.aukids.co.uk