Temple Grandin,Tony Attwoodand Tech Campsreviewed

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From A toZzzzzzzzzzzzThree families whosolved sleep issues

Will ThatBe All, Sir?Quitting the role ofbutler

A Class ApartHow the bestschools beatbullying

Positive Parenting for Children with Autism Spectrum Conditions

Issue 32Summer 2016

£15 annuallyAvailable from

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ANNIVERS

ARY

ISSUE!8TH

Makes me feelconnected withthe ASD community. Butwhat it doesn’t do ispatronise which I love.

Letter from the EditorsLetter from the Editors

Tori &Debby

AuKids is published by AuKids Limited, PO Box 259,Cheadle, Cheshire SK8 9BE, company number 7413180.

EDITORS:Debby Elley and Tori Houghton

PRINTING:R and P Printers, Dukinfield

GRAPHIC DESIGN:

Dan Salmons isn’t a professionalillustrator. However he is a profess-ional brother (Debby’s actually), likesto doodle and is rather good at it, sowe let him loose on page 8 and page16. Hope you like his drawings.

Whilst the products and services advertised inAuKids are recommended to us by readers, we arenot an industry inspector or regulator. We advisereaders to seek independent advice from regulatorybodies before signing up with a new serviceprovider and to check that products and equipmentmeet with industry standards.

The opinions expressed in AuKids magazine arethose of the contributor. Please seek medical advicebefore embarking on any therapy or behaviourintervention. All articles are copyright AuKids.

Subscribe NOW at www.aukids.co.uk or send a £15 cheque with your name and address on the back, payable to AuKids magazine to:AuKids, PO Box 259 Cheadle Cheshire SK8 9BE. Or go online for our NEW automatic subscription option - renew without lifting a finger!

2

Happy Birthday

AuKids!

• I Am Aspiengirl: Mandy Potts,Southport and Rachel Kaye,Manchester.

• Neurotribes: Caroline Wynne, Chesterand Antony Morris, Huddersfield.

• Why Do I Have to?: Michelle Hayes,Manchester and Judy Newton,Nuneaton.

COMPETITION WINNERS FROM ISSUE 31:

Wow, 8 years in publication! So, after allthis time – are we still getting it right?

This spring we launched a customer surveyand we’d like to share the results with you.

When asked if you would recommendAuKids to a friend, 72% of you said youwould. Rating the quality of the magazine,90% of you rated it as ‘very high’ or ‘high’.78% of you said that the magazine metyour needs either ‘extremely’ or ‘very’ well.80% of you rated the value for money ofthe magazine as ‘excellent’ or ‘aboveaverage’.

We asked you what AuKids did really well.Humour and positivity came out top of thelist! You like feeling part of a club and enjoyreal life stories from other families. The lackof jargon and waffle was also somethingyou commented on. As well as this, thepractical advice and friendly tone was alsoappreciated.

When asked for improvements, some ofyou would like us to have more fromparents and people on the spectrum. Morewas requested on girls. Schooling was alsoa theme. Above all, people want us to writemore for teens with autism. Watch thisspace! One or two of you felt the pagescould be rather busy; this is down to ustrying to cram as much help as we can intothe space, but we’ll keep that in mind.

We’d like to thank you all for your highlysupportive and positive comments aboutAuKids. The many messages gave us a realboost!

Enjoy our 8th Anniversary issue! We hopeyou can see that we’ve already includedsome of your suggestions.

When l was given the magazineat an event l felt very isolated,the magazine was like a friend.l was able to order back copiesof the magazine which l keepby my bed, l reread these a lot.

It really speaks to people

and is positive and respectful.

Your recent piece on girls on

the spectrum was great and

the book and media reviews

are wonderful too.

I look forward to it and enjoytaking time to read it. I lovethe friendly easy to read feelit has. So informative without

being over wordy.

The content is exceptional.

I subscribe to nearly all of the

autism magazines out there

and yours is the only one I

read from cover to cover!

Uses easy to understand

English without waffling in a

boring, convoluted, and off

putting way. Shows real

empathy and understanding

of issues its readers are facing.

It's like a little

ray of sunshine

landing through

the letterbox!

Some of yourcomments:

magazine

Quick, effective relief fromheadaches and nausea caused bymonotonous volumes of literature.

We get to those nagging parentingproblems fast! Impartial, reliableadvice at just a click (or two) away.

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Debby

MINI FAN: Massivecongrats to graphicdesigner Jo andhusband Paul on thearrival of baby Lornain April. Jo says “Lastissue was completejust as I was wheeledinto the delivery roomand this issue hasbeen done duringLorna’s naps!”

READERS’ PAGE Send your letters and images to editors@aukids.co.uk

AuKids magazine, Summer 2016

Reader Deborah Brownson, authorof He’s Not Naughty! is running acampaign for compulsory autismmodules on teacher trainingcourses. This initiative has takenher to 10 Downing Street andWestminster, where the issue wasdiscussed with the Minister ofState for Children and Families.

On May 9th 2016, the Director ofSpecial Needs for the Departmentof Education confirmed at ameeting of AAPGA (the All PartyParliamentary Group on Autism)that the Government is looking tomake autism a compulsoryelement on initial teacher trainingduring academic year 2017/18.

In the meantime, Deborah hasstarted a drive to provide an ebookversion of He’s Not Naughty! A Children’s Guide to Autism, free to all schools in the UK.

Deborah says: “This book can helptrain all school staff quickly and

easily and also help explain toclassmates in a highly visual andfun way, why children with autismbehave the way they do, whichhopefully will reduce bullying. I won’t benefit financially at allfrom this, but a lot of children withautism will!”

E-book copies of He’s NotNaughty! have already beenprovided to all primary schools inBarrow, Cumbria.

Deborah says: “I'm working withmy MP John Woodcock andCheryl Gillan MP, Chair of APPGA,to give a free copy of my e-book toall schools in the UK and met withCarol Povey from the NationalAutistic Society to ask for theirhelp in achieving this”.

Deborah has created a short filmwith the BBC on her campaign,which you can see here:www.bbc.co.uk/iplayer/episode/b06kjp86/inside-out-north-west-26102015

She is also working with BAESystems to make the companymore autism aware and to help toadapt their recruitment practices in relation to autistic people.

To find out more and to buy the book, go towww.hesnotnaughty.co.uk 

In 2009, our friend Brendan Rendallvisited an organisation called Friendsof Mulanje Orphans (FOMO), whichcares for 4,500 orphaned children inMalawi. He was so inspired byFOMO’s work that he decided tosupport them by raising £35,000 fora science and art extension at a newsecondary school there. Having known AuKids because ofhis work with autistic kids throughour sister company, Time SpecialistSupport, Brendan decided to helpour social enterprise too, by wearingAuKids T-shirts for his biggest

fundraising challenge to date –running the 650-mile length ofMalawi.

Brendan’s journey started early inJuly and he is planning to run 26miles a day for 25 days. He will be camping at schools and it’sexpected that hundreds of childrenwill join him en route, whilst his team will hand out footballs toschools along the way.Follow Brendan’s incredibleadventure on Facebook atwww.facebook.com/Helpfomo35/ or on Twitter at #RunMalawi.You can donate by going towww.justgiving.com/fundraising/helpfomo35

AuKids wishes Brendan the verybest of luck and a goodphysiotherapist!

Age: 5 I live: In Heaton Mersey

Diagnosis: Autism

Oliver is a happy boy who is often

smiling and has an infectious giggle.

Although Oliver understands a lot, he struggles to

communicate verbally with others. However, he has a

wonderful memory and through word recognition he can read

many story books and he can spell all of his favourite

programme titles using magnetic letters on his whiteboard,

which is pretty amazing!

Likes: Jumping in puddles, bubbles, climbing, bouncing on

the trampoline with his sisters, swings, ball pools, slides,

swimming, singing nursery rhymes, LEGO™,

reading, iPad, scrolling credits, calling out bus

numbers, camping, canoeing and throwing

stones into water.

Doesn’t like: The phone or doorbell

ringing. CBeebies on the TV. Any food

that isn’t fruit, sausages, cheese or bread.

Send your celebrity details to

editors@aukids.co.uk

Oliver Billington

Dear AuKids,My son was diagnosed withAutism at the age of 5(he is now 8). He has hada lot of support at homeand school and he haslearnt to cope with manysituations amazingly. Asautism parents we havefelt a little isolated andlonely so when a friendtold me about yourmagazine I was verykeen to sign up to asubscription!

As a 'thank you' for all that you doand the support and encouragementyou give to other autism parents Idecided I wanted to raise somemoney for you. My sister and I ranthe Great Manchester Run (10k) in1hr 3mins and raised £355 indonations for AuKids. I managed toknock 10 mins off my first go at itlast year so I am well chuffed! Thank you for being such positiverole models and an encouragementto us all!

Dear Sue - We are completely and utterly delighted that you decidedto run for AuKids and this is an amazing personal achievement aswell as a considerable contribution to the costs of running themagazine. Thank you so much from all of us at AuKids! X

I like:Jumpingin puddles

I don’t like:

The doorbell

ringing

With love, Sue Green xxx

Singer Beverley Knight

is one of the high-profile

stars supporting

Brendan’s quest.

The first AuKids logo in Malawi as Brendanarrives for his big charitable run!

3

Brendan’s Running

the CountryEr, Literally!

444 AuKids magazine, Summer 20164

In a rare UK appearance,Professor Tony Attwood drewhundreds of professionals,parents and adults on thespectrum to this event. The focuswas on presenting the latestresearch and best practice indiagnosing and supporting mentalhealth issues in children andadults with autism.

His keynote address included acomprehensive list of tools and anexplanation of how we should use

different kinds of tools at differentpoints on the ‘thermometer’ e.g.relaxation tools at low stresslevels and physical tools at highstress levels.

This was followed by a plenarytalk from bestselling author LukeJackson, taking a personal look atAsperger Syndrome and Bipolar.He talked very openly about hisjourney getting to both diagnoses,his many ups and downs and thecoping strategies he uses tomanage these.

The day then split into three‘streams’: clinical, interventionsand education. There were twosessions with Tony Attwood whichI attended, titled ‘The practicalapplications of recent research inASD at home and in the classroom’which reviewed some recentjournal articles for useful tips and

‘Challenges in the diagnosis andtreatment of depression in autisticteenagers and adults’.

One great idea in the second ofthose sessions was ‘EnergyAccounting’. The concept centreson keeping tabs on your energylevels in exactly the same way asa bank account. In the withdrawalsection, you note the activitieswhich deplete your energy while inthe deposits, note the activitieswhich refresh your energy levels.You give each activity an energyscore; e.g. sometimes, socialisingmight be a 20 drain and at othertimes 100. The resulting dailyfigure gives a measure of yourenergy and can alert you if youare repeatedly doing activitieswhich sap your energy levels,which could lead to ‘energydepression’.

Other sessions covered topicssuch as catatonia, the use ofpharmacological interventions,CBT for women, mentally healthyschools, ASD and OCD, musictherapy and anxiety management.

The conference layout could havetaken into account the crowds –an adult with autism I knowmumbled: “There’s too manypeople…” as we squeezed pasteach other at a bottleneck.Overall, though, today was veryuseful.

Attwood’s comment: “I think thatmental health services don’tunderstand autism,” got aspontaneous cheer.

Events like this can hopefullybridge that gap.

By Mark Haworth,AuKids readers’ panel

Sensory Oojamabobs(www.sensoryoojamabobs.co.uk) is a small UK company producing funky, chewy jewellery for those with sensoryneeds and those who just like to chew!

With a wide range of affordable pendants in many different colours, each item can be customised by choosing from over 80different lanyard designs. Whatever yourkids’ special interest, there is bound to be a lanyard ribbon to suit – everything fromThomas the Tank Engine, to Pacman andMinecraft is available!

Sensory Oojamabobs also sell Fidgi-Flips!These are an innovative metal fiddle toywhich is also widely customisable,available only from Sensory Oojamabobs.

To win either a chewy pendant or aFidgi-Flip in your choice of colourand lanyard design, just findwhere the ‘Ooj’ logo is hiddenin the magazine. Send your answer,together with your name andaddress and prize choice, to us at competitions@aukids.co.uk with‘Oojamabob’ in thesubject header. Or youcan write to AuKids,PO Box 259, Cheadle,Cheshire SK8 9BE.Competition closesAugust 31st 2016.

TALKA Day with Temple GrandinTown Hall, Reading June 2016Hosted by the National Autistic Society

CONFERENCENational AutisticSociety Conference - Autism and Mental HealthMarriott RenaissanceHotel, ManchesterMay 2016

Belong to a charity or voluntary group? Order ten or more copies of AuKids and get 20% off. Go to www.aukids.co.uk

BOB’S YOUR

UNCLE – 10% OFF!

AuKids readers get a lo

vely

10% discount on all thi

ngs

Oojamabob by using

AUKIDS16 as a promo

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Oojamabobs Have The Fiddle Factor

WIN an Oojamabob!

Good luck!

Reviews & PrizesReviews & Prizes

◀ IN THE FRAME: Our friend Abbi fromOojamabobs gets photographed withTemple at the NAS event

So, you may ask: What IS the big dealabout Temple Grandin?

Since the publication of ‘Emergence’ in 1986, Temple Grandin has helped toredefine how we think of autism. Asnoted in the foreword, at the time therewas “no other book like it- evenremotely like it,” as here an adult onthe spectrum tells the story of how shegrew “from an extremely handicappedchild who appeared destined forpermanent institutionalization to avigorous, productive, and respectedadult who is a world-authority in herfield.”

Uniquely for its time, the book provideda detailed insight into what it wasactually like to be autistic. Althoughnowadays we are fortunate enough tohave countless other autistic folkswriting about their experiences, hugecredit must go to Temple for blazingthis trail.

Her first speaking appearance at anautism conference in the mid-1980swas another landmark first and herability to answer questions fromparents led to her quickly becomingsought-after.

In 1995, Oliver Sacks’ book - AnAnthropologist on Mars - named afterthe chapter about Temple, catapultedher to worldwide fame.

Her next book, Thinking in Pictures,became an immediate bestseller. Sincethen she has published widely aboutboth autism and her work with animalsand is now recognised as a worldauthority in both fields simultaneously.

She has attracted criticism, especiallyfrom other adults on the spectrum, forthe way she frames the spectrum aslinear with “Einstein types at one end,and at the other end people with asevere disability who can’t dressthemselves” and has even beenaccused of ‘ableism’ by some for hercomments in The Way I See it:‘Preventing severe autism would be aworthy goal but preventing mild autismand Asperger's would be a gravemistake’.

This interesting talk was based on herthree recent publications: The AutisticBrain, The Way I See It and The LovingPush. Here she focused on theimportance of figuring out what kind of thinker a child is and using thatknowledge to develop their strengthswith a view to using these in a work orvolunteer setting.

As author Brenda Smith Myles toldAuKids: “She teaches us all thatindividuals with autism have limitlesspotential. There is no greater messagethan that.”

By Mark Haworth,AuKids readers’ panel

Courtesy of N

AS

5AuKids magazine, Summer 2016 5

Living with autism isn’t easy. But fi nding out all

about it should be.

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The Local Offer

Who for?Kids aged between 9-18 who lovetechnology, whether on thespectrum or not.

For day campers:Four separate weeks in July andAugust 2016 at ChelseaAcademy, London.

For residential campersor day campers:Run over four weeks in August atThe Wessex Conference Centre inWinchester

Tech Camp’s mission is to ‘inspiretomorrow’s inventors’, through its coding, electronics andengineering holiday camps andcourses. Building robots androckets, learning coding skills,designing computer games, 3Dmodelling and electronics are justsome of the activities like-mindedstudents enjoy at Tech Camp.

All projects involve innovativetake-home projects, so thelearning and fun can continue athome. Tech Camp’s innovativecourse material has beendeveloped over eight years and is continually refreshed to appealto both beginners and serioustechnophiles alike.

Established in 2008, Tech Campis the UK's original and longest-running provider of these camps,which students can attend in

either Winchester (residential) or London (non-residential).Students from across the UK –and from further afield - attendthe camps and learn from tutorswith bright, young minds and apassion for technology andengineering.

Tutors are carefully selectedbased on their specifictechnology-related skills, theirlove of the Tech industry and their genuine ability to inspiretomorrow’s young techenthusiasts. In fact, some of thetutors are ex-Tech Camp studentsthemselves, who are nowstudying tech and engineering at the likes of Cambridge andImperial.

Small tutor groups are maintained– with a maximum of 1:8 staff tostudent ratio - to provide the bestpossible experience. On top ofthis each camp also has amanager - normally anexperienced teacher and/orparent to ensure the camp runssmoothly and to look after thewelfare of the campers - anddepending on the size of thecamp, a number of assistants aswell.

Tom Ward, Tech Camp’s founderand trained as both an electronicengineer and teacher, tellsAuKids: “We get quite a fewstudents each year who are onthe autistic spectrum and theynormally cope really well. Acombination of small tutorgroups, individual assistance anda shared love of technologycreates an inclusive environmentwhere campers are free to be themselvesoutside of aconventionalschoolenvironment”.

For details of Tech Camp visitwww.techcamp.org.uk

PREVIEW: TECH CAMP

What

did the Tech

Camp kids think

of it? – see

our October

issue.

Don’t forget - If a friend subscribes, you get your next issue FREE!

WANT TO SUPPORT US?

AuKids is a not for profit social enterprise. You can help usby sponsoring an issue of AuKids. Get in touch to discussthis further at editors@aukids.co.uk

AuKids magazine, Summer 20166

Mary Sheard, Occupational Therapist:

Temple Grandin (Thinking in Pictures, 2006)describes the repetitive behaviours thatsupported her to overcome sensoryoverload when she was a child. She is ableto eloquently help us understand thebehaviours from her perspective. Shedescribes the detail of contour, shape andcolour that she could see in each grain ofsand dribbled between her fingers. Considerthe sensory experiences of your child, whomay gain a much richer understanding fromthese activities than can be observed by anoutsider. Jennifer Cook O’Toole (TheAsperkid’s Secret Book of Social Rules,2013, p228) asserts that she can see“beauty in those pieces and patterns.They’re hypnotic and ordered”. It isimportant for children with autism to findand use strategies that can support them tofeel calm in a world that may feeloverwhelming.

Alison Fielding, Speech and LanguageTherapist:

A routine which seems repetitive to theoutsider may be being subtly changed bythe child as they build up a new playroutine. This enjoyable experience shouldnot be discouraged, but it would beimportant to try and join their play activity.Perhaps by imitating their actions and tryingto establish some joint attention beforemodelling an extension of their own ideas.This would be a way of joining a child intheir world whilst developing an awarenessof those around them. Joining theirrepetitive behaviour can also be a good

opportunity for the child to hear the spokenwords that relate to their own actions.Giving a simple, non-directive commentaryto describe their actions will help the childbuild on their understanding of language, byreinforcing key words.

Steve Tyler, Psychologist:

A key point is to try to determine thefunction or functions that the pattern ofbehaviour fulfils and the contexts in which it occurs. The same pattern of behaviourmay serve different functions on differentoccasions and in different settings. With abehaviour pattern of this nature, it may besomething that occurs when the child isanxious and serve as an emotional regulator.Alternatively, it may occur when the child isbored and seeking stimulation, where itserves as a “low risk” activity that the childhas rehearsed before and where theoutcome is predictable. Again, it may be anactivity that the young person performs forthe pleasurable sensation that it provides. In some instances, it may fulfil a number offunctions. Once we have determined thefunction(s) we may seek to provide asubstitute and to limit the behaviour patternto particular times. These times can be putonto a schedule, but the child may beallowed to engage in the behaviourspontaneously if an overriding need is there.

To answer the question, the responsesfrom our team suggests: 1) don’t worry 2) whether it is harmful depends on thepatterns of behaviour but in mostinstances no 3) there are strategies butthey may take time to work.

Together TrustTogether for Families TeamHighly specialist OccupationalTherapists, Speech and Languagetherapists and a consultant EducationalPsychologist work collaboratively tosupport young people with ASC andtheir families at home, school and inthe community. They provide specialistautism advice and training toprofessionals in a range of settings.

Ask the ExpertsAsk the Experts

Want to renew but forgotten your username and/or password? Contact admin@aukids.co.uk

Left to right: Sue Whitehead (Head of TherapyServices), Steve Tyler (Psychologist), AlisonFielding (Speech and Language Therapist),Mary Sheard (Occupational Therapist)

One Person’s Passion,Another’s Poison

Repetitive behaviour may becomforting to one person andtroubling to another. Or, morecommonly, it can be comforting at certain times and feel like

a prison at others.

Co-editor Debby’s son Bobby says he enjoyswatching You Tube clips repeatedly because ithelps him to remember them by heart. “Then I can remember them when I’m feeling bored. And if I’m upset. Remembering them makes mehappy and calms me down”.

But Amanda, an adult with autism who also workswith children on the spectrum, has this to say:

“Sometimes I feel compelled to dothings even though I may not enjoythe thing. What starts as an interest -in the case of my latest one, Toddlersand Tiaras - sometimes turns into anobsessive cycle where every sparemoment is filled with the obsession.This would be fine, if the obsessionwas something I loved (and then Iwould call it a passion), but when it’ssomething I never really liked, it's acompletely different story.

“It’s like I’m repetitively doing thething, wishing the last episode wouldcome, until I can’t do it any more -and then I’m very relieved!

“However, that’s not quite the end of it. When it’s over, I feel like theworld as I know it has caved in. Eventhough I logically know it’s just a TVseries (and a really bad one at that),my brain thinks, ‘If that can change,what else in my world can change?’and I feel this sense of insecurity untila new obsession is found.”

I worry about my son spending toomuch time doing the same thingagain and again. Should I worry?Is it harmful? What can I do?

All people really strugglewhen they don’t knowwhat something is orwhat’s happening aroundthem. This is nothing todo with disability, orautism, this is human.

None of us like that‘bump’ in the nightfeeling: a sound fromdownstairs that’sunidentifiable. The ‘notknowing’ floods oursystem with adrenalineand the stress hormone,cortisol. Once we haveplucked up the courageto investigate, and findout it’s just that darn catknocking over the milkagain, we can relax. “It was just a thirstykitty”, you say. Workingmemory holds on to the ‘meaning’ of thesituation and you candrift off again.

One thing you don’tneed to do is keeppopping downstairsagain and again to checkyou have the ‘meaning’right.

But you might if you hadautism.

In autism, the brain hasa hard time joining thedots together or makinga coherent, meaningfulpicture out of sights,sound, colour andtexture etc. It might belike seeing too much ofthe ‘media’ but notalways getting the‘message’. So when you HAVE autism, andsomething familiar isavailable - oh boy -that’s a lot less hardwork and definitely notscary. When you DON’Thave autism your brain is like a message hunter- it locates, absorbs andholds onto meaningeasily and doesn’t gettoo troubled or tied upby the media or details.

When everydaysituations, people,places, language,images, fail to form upinto something that feelslike ‘meaning,’ your braincan’t cope. Nobody’scould. If you have autismthis happens to you alot.

I think that repetitivebehaviour in autism, orspending a lot of time on something that youknow the ‘meaning’ ofand find rewarding, is anattempt to make a littleoasis of understanding in a desert that is all toooften devoid of meaning.

And as such it’s just fine.When we let little guyson the spectrum knowthat they can haveaccess to the things thatthey value, that weunderstand and respectthose things, they canbreathe a sigh of relief. It often transpires thatthe understanding andrespect from the peoplearound them means theymight actually need thatinterest or behaviourless!

Chris Barson

Originally trained as alearning disabilities nurse,Chris joined the NationalAutistic Society’s regionaldevelopment team beforemanaging professionaldevelopment and qualityprogrammes for the Royal

College of GeneralPractitioners. He laterrejoined the NAS as anexternal training managerbefore launching the

training company PositiveAbout Autism in 2009. He is a contributingauthor to ‘The AutismSpectrum in the 21stCentury: Exploring

Psychology, Biology andPractice’ published byJessica Kingsley.

AuKids magazine, Summer 2016 7

Autism is a neurobiologicaldevelopmental disorder. The nerveslink up differently. Children andadults on the autistic spectrumexperience the world that we sharedifferently from those of us who arenot autistic.

Due to problems in their sensoryprocessing systems, they see, hear,feel and generally sense the worlddifferently. This sensory overload isdescribed variously as, ‘like being ina kaleidoscope where the patternnever settles’, or ‘having a lion, orCatherine Wheel, or Molotovcocktail in my head’, or ‘having myhead in a car crusher’. Although theeyes and ears and other senseorgans may work perfectly well,messages get scrambled on theway to the brain.

The child focuses on a particularactivity to try and cut downincoming sensory overload. Thishelps them to make sense of theirenvironment - it means there is atleast some signal that the brainunderstands. When they are doingit, they know what they are doing.These special activities are knownas ‘repetitive behaviours’ or ‘stims’.They are vital for the child tomaintain some sense of coherence.

It is very difficult for those of uswho are not autistic to take onboard what it is like to experiencethe sensory chaos which may feellife-threatening for them.

Making a judgement from our ownsensory experience, we feel weshould try and limit them since itappears to interfere with their abilityto communicate. This is to miss thepoint. Do not try and stop them, oryou will make it more difficult forthem to understand what is goingon.

These self-stimulatory behaviourscan be used to give us access as to how the child or adult is feeling,since these are the signals thathave meaning for them: how theydo the gesture or make the soundreflects their emotional state; I mayflap my hands gently or thrash the

air with them - this will either say Iam content or I am really upset.

We can use the way they do theiractivities as an effective language,to build up a non-verbalconversation and engageemotionally with them. In practicewe use their body language tocommunicate empathetically withthem. This is known as IntensiveInteraction.

Each individual has their ownlanguage. The easiest way to learnis to think of how a mother andbaby communicate. They do notexactly copy each other but useeach other’s sounds and gesturesto interact. When used with adults,this is not to infantilise ourconversation partner but to valuethem and what has meaning fortheir brain.

Distressed behaviour usuallymoderates but there may beindividual children for whomsensory issues, pain and eventrauma also need to be addressed.This needs more detailedassessment.

The most common sensory issuesare visual (with distortions triggeredby intense light or bright colours orpatterns) in which case they couldbenefit from a Colorometric Test. Ifthey are having auditory problems,try BOSE Quiet Comfort 25 NoiseCancelling headphones. These canbe life changing. They need visualand auditory tranquility. Problemsare also an outcome of difficultiesexperienced when messages arenot reaching the brain from thejoints and muscles, so the childdoes not have a sense of what theyare doing. They need strongphysical messages provided byactivities such as trampolining. Inmy book ‘The Anger Box’ you willfind more details of suitableactivities and equipment to help.

So a rough answer to the questionis, do not try and stop repetitivebehaviour as you will increase theirstress level. Look and see how yourchild is doing whatever it is andrespond to their body language toset up an empathetic conversation.

The easiest way to learn is to putaside what you think the child oradult should be doing and join ininstead. There are video clips andbooks recommended on mywebsite www.phoebecaldwell.co.ukand two DVDs, ‘Learning theLanguage’ published by PavilionPublishers, and ‘Autism andIntensive Interaction’ published byJessica Kingsley Publishers. Theapproach also applies to more ablechildren who are semi verbal.

Colometric testing: Tina at IrlenSyndrome East. Tel: 07745 333314

Email: info@irleneast.com

Concept Training IntensiveInteraction courses – Tel: 01524832 828.

Do you have a question forAsk the Experts? E-mail us ateditors@aukids.co.uk

Phoebe CaldwellPhoebe Caldwell is an expert

practitioner in a technique knownas Intensive Interaction and has

over 40 years’ experienceworking with people whosesevere learning disabilities arelinked with behavioural distress.

Author of ten books, her latest,‘The Anger Box’, published byPavilion, combines practice withrecent neurobiological research.

8 AuKids magazine, Summer 20168 Don’t forget - If a friend subscribes, you get your next issue FREE!

MY twins are perfectly capable ofsorting out their own Weetabix inthe morning. Sort of. One with abit of prompting, one with a lot ofprompting, gritted teeth, patienceand a dustpan and brush.

Forgive my slovenly ways, but7.15am isn’t the time when I wantto be teaching them independenceskills. Unfortunately, it’s the timewhen most of the independence-type activities take place. Gettingdressed, brushing teeth, preparingbreakfast.

So for Alec, I’m basically a butler.For Bobby I’m more of a stylist toensure his shirt collar looks neat,his shoes are on the right feet andhis hair is gelled in an artistic way(rather than an autistic way, whichis what would happen if I left it tohim).

Don’t get me wrong, I want mykids to be independent. It’s justI’d sooner it happened by magic,without the daily effort it takes toget them that way.

The only thing that stops me inmy tracks is the thought that oneday these little guys will be 20years old. Whatever I do now willaffect them as young men. Sincethey reached the age of 12 in theblink of an eye, that isn’t so faraway as I may like to imagine.

Plus, I know for sure that we needto teach our autistic kids socialskills and so it’s a bit illogical toassume that self-care is going tocome any easier or happen byaccident.

To understand why and how youneed to teach independenceskills, you need to know what’sgetting in the way of learningthem.

Take a passive child, like Alec.Alec is 12 and by rights should betelling me to naff off out of hisbedroom. But Alec is used tohaving a servant who comes inand puts his socks on for him.

It started when he hadn’t got thefine motor skills to do it. Now hehas, but is slow, partly through lackof practice but mostly because hehas been programmed to thinkthat this will be done for him.

And here’s the thing: becauseAlec has autism, he has noconcept of what he should bedoing himself and what I shouldbe doing for him.

How does he know that there’s adifference between putting a belton – something that I would helpBobby with – and putting jeanson, which I expect him to dohimself? How does he know whata kid his age is supposed to beable to do? How does he evenknow that independence isconsidered a ‘good thing’ andsomething he should be aimingfor in life?

We assume that independence isa natural motivation and for manyof us it is a developmental step.But the thought ‘I want to do itmyself,’ has to precede thatmotivation. Some kids may notexperience that thought. In others,the task may seem so dauntingthat the thought quickly fades.

You might want to climbKilimanjaro yourself, but if youdon’t feel you’re capable, you’llquickly give up thinking about it.

So if there’s someone who can doit quicker, why not?

My own expectations are Alec’sonly signal that this world viewis mistaken.

What I’ve just described is what professionals call ‘learnedhelplessness’ or what I prefer to describe as ‘The ButlerExpectation’. If I stop helping juston the odd occasion, Alec doesn’tthink ‘okay I’ll do it myself,’ hethinks ‘Where’s the butler?’ It’sonly when I stop helping onmultiple occasions, consistently,that my expectation changes histhinking.

Bobby, on the other hand, haswhat some might call HFA (HighFunctioning Autism). In otherwords he doesn’t have learningdifficulties and is in a mainstreamschool. This may lead you tobelieve that he has more of a cluethan Alec when it comes toindependence skills. But evenfolding a pair of pyjamas isproblematic. Why?

Executive functioning is affectedin people with autism. Ourexecutive functioning enables usto quickly break a task down intovisualised smaller steps, thensystematically work our waythrough them. That is whyseemingly obvious steps may notbe apparent to even the brightestautistic person and some peoplewith Asperger’s often appear tobe disorganised or scatty.

In addition, focusing on detailrather than the wider picture isn’thelpful when you’re working to adeadline. Autistic people needstructure to help them problem-solve in a linear way.

Now let’s add me to the mix. I’vegot a kid with severe learning

You’ve just been given a host of helpful strategies toencourage your child’s independence by someonewhose enthusiasm demonstrates that they’ve probablyhad more sleep than you. You’re feeling strong anddetermined. Then 8am on Monday morning happens.

Over the years, I’ve been the best butler my autistic twinscould wish for. Eventually, I learnt how to avoid givingthem the Five Star treatment. But it wasn’t easy.

By Debby Elley

“If I stop helping just on theodd occasion, Alec doesn’tthink ‘okay I’ll do it myself,’ hethinks ‘Where’s the butler?’It’s only when I stop helpingon multiple occasions, thatmy expectation changes histhinking.”

9Belong to a charity or voluntary group? Order ten or more copies of AuKids and get 20% off. Go to www.aukids.co.uk

difficulties and helping him withpractical things is so much easierthan working on anything social. I don’t like to see him struggle.

So, the danger with both of ourautistic twins is that their dad andI will give up teaching themindependence skills altogether.But of course that’s not theanswer. So what is?

Explain the WholeIndependence StoryBobby used to think that if I askedhim to do something, it meant hewas expected to be an adult. It’shelpful to learn that independenceis part of a learning curve thatnever stops. Explain it in terms ofa gradual continuum and not asingle target, so that it doesn’tseem daunting.

Step by Step GuideYou can do this with writteninstructions or with symbols, butby breaking down a task intostages you take away theproblems caused by lack ofexecutive functioning. For onechild, this may mean a checklist ofthings to get ready for the schoolday the night before. For another,it may mean a step by step guideto drying themselves after a bath.Checklists reduce anxiety, too.

Keep to a RoutineThe key to doing things yourself is having a predictable routine. If the socks always go on after thetrousers, and then one day mumholds back and waits, they maytry and have a go themselves!

Change the Expectationand You Change theResponseSimply by expecting them to dosomething on a regular basis,however small, you change the

interaction from passive to active.Eventually you come to a placewhere your child doesn’t sit therelike a limp biscuit but activelypredicts the request and goes toput his or her feet in their trouserlegs.

Don’t Swallow It WholeThe key is not to eat the cakewhole, but to swallow it one biteat a time. Begin with the smalleststep they could easily masterthemselves. Start with a lot ofsupport and very graduallyremove the support.

We all learn everything by degrees,the only difference is that thosedegrees may be smaller and takelonger with an autistic child.

You may start by pushing an arm through a sleeve, and worktowards touching the arm andsaying ‘arm’ and finally promptingwith just the word ‘arm’.

In a Rush? Don’t Sweat ItAutistic kids feel tension as if you actually were a coiled springsitting in front of them. Choose atime when your own mood isgood.

Slow Yourself DownWhether it’s helping withhomework or stepping back whilstthey wash their face, count to 20in your head. As with a lot ofautism strategies, playing dumband pretending you don’t knowhow to do something is also agood way of getting them to thinkfor themselves. Small prompts arebetter than taking over: “Is it yourtie or your socks next, what doyou think?”

Show Don’t TellInstead of describing how to foldpyjamas, life became a lot easierwhen I demonstrated it to Bobby

and then asked him to copy whatI’d just done. Autistic kids arevisual thinkers, so don’t letlanguage processing get in theway.

Let Them Make MistakesYes it’s like watching paint drywhen the wrong foot is put intothe wrong trouser leg, but youcan’t learn if you don’t have toproblem solve.

Let Them Judge TheirOwn WorkI think about saying “Your tielooks bizarre!” but then I showBobby in the mirror. Can he spotwhat’s wrong? Have a look in thetie area…

Praise Like CrazyWe’ve established here that theintrinsic reward of ‘I did it myself’and the motivation of beingindependent isn’t necessarilypresent in our kids. But what theydo love is your praise!

Stitch in TimeYes, you might get a crosschild if things aren’t done forthem! As long as you’re notdemanding too much at thewrong time and they’repraised, that will fade. Andthis just goes to show thatit’s even more important todo this whilst they’re young.

I’ve put these tips into practicewith Alec and Bobby. In Bobby’scase, he is far more independentand that’s given him confidence.In Alec’s case, it has helped hiscommunication, too. When I dideverything for him, he neverneeded to ask. Now, he hasstopped seeing himself as anextension of me and has learnt to ask for help.

So – where to start? With onequestion – what am I now doingfor my child because I havealways done it?

Good luck everyone, I lookforward to downgrading your Five Star hotel to a lousy B&B!

Breaking News: Bobby just madehis own breakfast WITHOUTmaking any mess...

With thanks

to my colleague Tori

Houghton and Dr Heather

MacKenzie, who both taught

me how to downgrade my

own hotel.

AuKids magazine, Summer 2016

Co-editor Tori, a speech and languagetherapist, was working with an adult inhis 30s whose autism severely affected himand was supporting his parents in increasing communicationopportunities. She says: “They ran a Five Star hotel, thebreakfast cereal was out on the table before he got up. I askedthem what he would do if the Cornflakes weren’t out.

“They looked at me and then at each other in horror, as he hadbeen known to be violent in the past. I explained that if it wasalways there for him, he’d never be able to communicate aboutit because he wouldn’t have an opportunity to request. Theytook my advice on board and the next morning, left theCornflakes in the cupboard. They expected him to kick off or getupset, but he just walked over to the cupboard and got theCornflakes out himself. This was a huge step for both him andhis parents!”

Not A Cereal Offender!

10 AuKids magazine, Summer 2016

A Long andWinding Road...Matthew’s story by ChrisHoyle and Tina, his mum

Matthew is 10 and lives withhis parents and elder brother.He is academically able withgood language skills and willargue and negotiate with hisparents. He doesn’tunderstand social rules andfinds social interactions verydifficult, which meanshe has few friends.He has high anxietylevels and sensoryissues whichparticularly affect hiseating and drinking.

Matthew’s parents’entire evening wasspent trying to getMatthew to bed andto settle to sleep - which couldtake between 30 minutes andthree-and-a-half hours. Theyfelt that they had no time tothemselves.

The ASC SleepClinic Programme

Chris says: ‘Looking atMatthew’s evening routine wasa crucial place to start. It reallywas taking all evening –starting at 6.30pm and notending until after 11.30pm.Rearranging it was key. We linkgoing to bed with going tosleep, so the family needed toremove the use of screensonce Matthew had gone tobed and reduce the lightinglevels at sleep time.

‘The new routine wassupported with a written visualschedule which mum showedMatthew every evening and an

illustrated narrative showingeach step of the new routine.This helped Matthew tounderstand the sequence andsee that he still had time touse his favourite devices.Visual cues to support puttingthe iPod to charge and turningoff devices were also provided.The new routine purposefullyhad a later bedtime, which canbe a useful technique to helpchildren settle to sleep quickly.

‘Looking at the morningroutine was also important forMatthew as at the weekend he

was sleeping in forseveral hours afterhis week day risingtime. Like manyfamilies, Matthew’sparents felt theywere being kind byletting him sleep in.Restricting theamount of time heslept in, however,would help him to

settle faster in the evening.Within two weeks Matthewwas settling to sleep on hisown by 9.30pm’.

Tina’s comments“At first we thought the sleepprogramme was going to bereally hard and that we mightnot get Matthew into theroutine with him being so fixedin the routine we had. But wefollowed all the advice andstuck with it. It wasn’t easy tostart with, but we persevered.We are so glad we did. It madelife much easier for our familyand it was also really good forMatthew as he gets a goodnight’s sleep and is in a muchbetter routine.

“The sleep programme wasthe best thing we have donefor Matthew and our family asa whole.”

Back in MyOwn Bed!Thomas’s story by Rachel, his mum

Thomas is 9. He is a happyboy who loves playingMinecraft, Super Mario Kartand being outdoors. He has asyndrome (Smith-Lemli-Opitz)which means he has moderatelearning difficulties, is on theautistic spectrum and is deafwith a cochlear implant.

Thomas communicates with a few words and picturesymbols. He has had sleepissues since the day he wasborn and when we approachedthe sleep clinic, he wouldn’tfall asleep in hisown bed.

Despite trying everynight to settle him in his own bed, hewould run out of hisroom and eventuallyfall asleep next tous on the sofa. Wewould then carryhim up to bed whenhe was fast asleep.When he woke inthe night, which hedid every night, wewould take himdownstairs and sleep on a sofabed for the rest of the night.Whilst this routine took awayany child-free time, we wererelieved Thomas remainedcalm. This was after severalyears of trying to keep him inhis room while he cried andscreamed. However, as he gotbigger it was harder andharder to carry him upstairs tobed and we knew somethinghad to change.

After attending the ASC sleepclinic workshop I felt sorelieved, relief at meeting otherparents whose children hadsimilar sleep habits and notembarrassed or feeling like auseless parent.

Helplessness was replacedwith positivity. I left theworkshop brimming with ideasand we put some plans intoaction straight away. Wecontacted Chris for some moreinformation after the workshopand had a chance to go into

fine detail about Thomas’needs.

Chris tailored the plan to takevery slow steps. Using visualschedules and prompts, wemoved to Thomas settling inhis own bed with us next to

him and graduallymoving so that we saton a chair at the sideof his bed whilst hesettled to sleep inbed. We slowly movedthe chair further awayfrom Thomas in hisbed and nearer thedoor.

We have also found ithelpful to put a light inhis room that can beset to gradually getbrighter over 90

minutes before it is time towake up (Lumie light). Becauseof Thomas being deaf, it iseven harder to communicatewith him in the pitch black ofthe middle of the night. Thelight has been useful to givehim the message that if it isdark it is still time to sleep andif the light is bright it is time towake up.

The gradual withdrawal fromThomas’ room isn’t a quick fixand sometimes we have had totake a few steps back but ourview was the ‘cry it out years’were so distressing for all ofus, and we have had 9 years ofsleepless nights, so a fewmore months wouldn’t matter.Now my son settles himself tosleep in his own bed within amatter of minutes of ‘lights out’as we sit in his doorway andhe frequently sleeps all nightwithout waking.

We are now close to leavinghim alone in his room to settle.

Chris Hoyle is the Autism SleepClinic Co-ordinator at the TogetherTrust charity. The Trust’s ASCSleep Clinic has been workingwith the families of children withautism for 11 years, running parentworkshops and working withindividual families to providepersonalised sleep programmes.

Here are three of Chris’s familieswho overcame sleep difficultieswith some simple strategies.

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The Way to the Land of Nod

“To settle tosleep could

take between30 minutes

and three-and-a-half hours.”

“As he gotbigger it washarder andharder tocarry him

upstairs to bedand we knew

something hadto change.”

11AuKids magazine, Summer 2016

It’s Goodnight From Me - and Finally - It’s NowGoodnight From Him!Kian’s story by Serena, his mum

Kian has some words and uses PECS(Picture Exchange CommunicationSystem) and signs to communicate.

His frustration around not being able to communicate as well as sensorysensitivity meant that he displayed somechallenging behaviour which was difficultfor him and us as his parents. Kian reliedon routine and structure; he couldn’t dealwith any changes, no matter how small.We found that as long as routines werestuck to, we could have successfuloutings, but more often than not theseproved difficult.

Kian’s sleep problem andevening routineFrom the age of about 3, he would go tosleep okay but would constantly wakethroughout the night. Sometimes hewould just stay awake saying words overand over to himself about games that heliked, or humming songs he liked.

At other times, he wouldexperience night terrors andwould often lash out when hewoke from these and was difficultto console. This had a knock oneffect throughout the day, as hewas often tired, not getting intoschool until late into the morningand sometimes falling asleep inthe day. It also had an effect onhis behaviour as the tirednessacted as a trigger for meltdowns.

Before the sleep counsellor came, wehad used a horizontal picture timeline for Kian’s evening routine. When he gotready for bed and put his pyjamas on, hewould often have a bit of time to watchthe TV in his room before he went tosleep.

Chris took an in depth history and afterwe had completed a fortnights’ sleepdiary, she devised a personalised sleepprogramme.

New evening routine andoutcomeHis new programme involved changes to Kian’s bedtime routine. Once he wasupstairs and in his pyjamas, there wasno TV and we were given a ‘TV finished’picture to place on the TV for Kian to see. We were also given a new visualschedule. This used symbols to showKian the sequence of activities with a‘finished’ pocket at the bottom for him to put the symbols in once the activitywas done. He enjoyed doing this. Wewere also given symbols for ‘time tosleep’ and ‘morning’.

The outcome for us wasinstant. Going through theextended timeline with him onthe first day, he showed a lotof interest in the new symbolsand looked at them for a longtime whilst I explained abouthaving a sleep and waking upin the morning.

The first night we implementedthe new strategies, Kian sleptthrough the night for the firsttime in ages! When I went in to

get him the next morning the first thinghe said to me was “It’s morning. In themorning you wake up. Phew.”

We stuck to the strategies and Kianstarted sleeping through the night moreregularly. He would have the odd nightterror but the advice from the sleep clinicwas not to not wake him up and justmake sure he was safe, so these didn’tlast as long. He is 10 now and sleepsthroughout the night and has done sinceour help from the sleep clinic.

• ‘The light from an iPad is enough to inhibit the brain’s production ofmelatonin’ – Professor Paul Gringras.Turn off the TV and gadgets at a settime - about an hour before bed if youcan. Bath time creates a natural breakfrom gadgets and the beginning of abedtime routine.

• The ASC Sleep Counselling Service is available at the TogetherTrust in Stockport – look upwww.togethertrust.org.uk and fill in anenquiry form, or call 0161 283 4766.

• Chris’s Sleep clinic workshops areavailable throughout the year at avariety of North West locations – findthem at the Together Trust’s website.

• For some great sleep tips, look up the National Autistic Society’s page atwww.autism.org.uk/about/health/child-sleep.aspx

• DownloadAuKids Issue 15 from ourarchive to seemore from Chris.

• Getting undressed and preparing forbed in either the bathroom or bedroom,and keeping upstairs in the bedroomonce the bedtime routine has startedwill help your child make the link withbedtime and avoid confusion, creatinga firm routine. Don’t return downstairsonce the bedtime routine has started,even if it means starting it a bit laterthan previously.

• The Lumie BodyclockSTARTER 30 Wake-Up LightAlarm Clock with Sunriseand Sunset is available forabout £50from Amazon.

• BOOK: Sleep and YourSpecial Needs Child byAntonia Chitty andVictoria Dawson.

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ExtraInformation

“Now my sonsettles himselfto sleep in his

own bed withina matter ofminutes of‘lights out’.”

AuKids magazine, Summer 201612

My Son’s Not Rainman-BLOG

Who writes it? Comedian JohnWilliams, dad to a 13 year old boywith autism, who performs a stand upshow (usually for charity) of the samename. An excerpt from the show wasrecorded for Radio 4 ‘Four Thought’and was selected by the BBC as oneof their Magic Moments of Radio2015 as well as featuring on Radio4’s Pick of theYear. John hasa book of thesame namebeing publishedby Michael O’ Mara booksthis September.

What is it?As it says onthe site: One man.One autistic boy. A million adventures.

Where can I find it?www.mysonsnotrainman.com

Perspectives on Autism -BLOG

Who writes it? SheffieldHallam senior lecturer in autism,Dr Luke Beardon, for whom wehave serious respect – he’s oneof our own panellists and that’sbecause he’s brilliant.

What is it? Sensationalmusings on autism in every daylife, by a professional who livesand breathes the subject. Luke’swriting is fluid and colloquial, hispassion for autism (as it’s lived)runs through the blog like theword Blackpool in a stick ofrock.

Where can I find it?blogs.shu.ac.uk/autism

Speaking Geek:Translating Typical for

the Human Spectrum -VLOG

Who films it? Inspiring author,speaker and Aspie JenniferCook O’ Toole, whose bestselling books are makingJessica Kingsley Publishers very happy at the moment.

What is it? A sort of geek’sguide to the universe, anunravelling of awkward socialsituations and of rules thatpeople on the spectrum mayhave trouble understanding.Jennifer is a superb life coachfor those on the spectrum – andtheir parents. This blog is anextension of Jennifer’s otherwork at www.asperkids.com

Where can I find it? You can subscribe on You Tube oriTunes – check out this linkasperkids.com/speaking-geek

SENCology -BLOG

Who writes it? A mixtureof great education professionals,with plenty of guests. One of thewriting team is Gareth Morewood,the inclusion expert interviewedin our bullying feature.

What is it? It’s a pool of wisdom on what makes for goodinclusion practice in schools. An excellent resource for anyoneworking in special needs andquite interesting for parents, too.

Where can I find it?blog.optimus-education.com

Go TeamKate -BLOG

Who writes it?Mum ShanellMouland talks about

her two daughters Grace and Kate – Kate has autism.

What is it? Family life described inthe coolest way imaginable, by a wiseand witty mum with a lot of warmth.

Our favourite bit: Please, take note.Here are the questions I cannot helpyou with: Do you think I have autism?Do you think my neighbour hasautism? Do you think my husbandhas autism? Do you think my kid hasautism? Do you think my cat hasautism? Do you think my car hasautism? and Can I get a small loan?

Where can I find it?www.goteamkate.com

Neurowonderful-BLOG AND VLOG

Who films it?Amythest Schaber- an autistic writer,artist, public speaker,activist and advocate.

What is it? Amythestblogs about autism, disability, socialjustice and living a neuro-atypical life.She also writes and produces theseries Ask an Autistic on You Tube.We found the series helpful asAmythest has got a beautifullystraightforward way of explainingsome complex issues surroundingautism.

Where can I find it? The Ask an Autistic series can be found atwww.youtube.com/user/neurowonderful and Amythest’s blog is atneurowonderful.tumblr.com

Sonny Days: Believingautistic children are

AWETISTIC -BLOG

Who writes it? Melanthe Grand,probably the best supportworker in the universe.Having worked inSonny’s school andleft in 2013, shecouldn’t bear not tosee him again. So shebecame his supportworker.

What is it? Mel takes Sonny onadventures around London, andblogs about it. The ups, downs,highs, lows – the lot. Her zest forlife and sense of adventure isawesome.

Where can I find it?www.mysonnydays.wordpress.com

The CurlyHair Project-BLOG

Who writes it? AlisRowe, AKA The Girl with theCurly Hair. Cartoonist,speaker, autism advocate.AuKids has published someof her endearing cartoons.

What is it? Alis shares some reallygood strategies, based on her ownexperiences. You have to subscribefor some of the content, at a cost of£2.49 a month, but this helps to fundsome of the other initiatives by TheCurly Hair Project.

Where can I find it?thegirlwiththecurlyhair.co.uk/asd-blog

We can’t pretend we’ve read all thegreat blogs out there. But we’vecome across some darn good ones.Here’s some of our favourites.

Autistic Genius -VLOG

Who films it? Brummie Tom Bowes, who has autism – ‘Vlogger,writer, autism advocate, public speaker and generally a nice guy’.

What is it? Autistic Genius is not so much a vlogger as a force ofnature. Bursting out of the screen in a flurry of animated arms and facialexpressions, he’s energetic, engaging, insightful and disarmingly honest.He’s obviously had a good upbringing, too, as he brings a raft of triedand tested strategies to the vlog.

Where can I find it? You can follow AutisticGenius on Facebook or Twitter and find hisYou Tube channel at www.youtube.com/channel/UCdBu3o9ZvlD5oadvvzLTZsg. He is a busy guy and becoming a popularspeaker, so there are some stops andstarts, but the back catalogue will keep you amused for ages.

Ido in Autismland -BLOG

Who writes it? Ido Kedar, a non-verbalyoung man with autism, who wrote the book

Ido in Autismland at the age of just 16.

What is it? Ido says: I am an autistic guy with amessage. I spent the first half of my life completely trapped in silence. The second - on becoming a free soul. I had to fight to get aneducation but I succeeded, graduating high school with a diploma anda 3.9 GPA (the equivalent of an A - ed). I plan to go to college tocontinue my education. I communicate by typing on an iPad or a letterboard. My book, Ido in Autismland is an autism diary, telling the storyof my symptoms, education, and journey into communication. I hope tohelp other autistic people find a way out of their silence too’.

Where can I find it? Both the blog and a selection of videos areavailable at idoinautismland.com

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BLOGDASHINA

A paper blog by autism expert Olga Bogdashina

Blog 6

“Two little eyes to look around.Two little ears to hear

each sound,One little nose to smell…”

We all happily sing these lines withour children. But what if eyes can‘see’ sounds, ears can ‘hear’ tastesand noses can ‘smell’ colours?

It might sound absurd, but these arethe experiences of those with cross-sensory perception, the commonterm for synaesthesia. Although itisn’t specific to autism, synaesthesiaseems to be quite common amongautistic individuals.

My son Alyosha was about 9 yearsold when he tried to account for apanic attack by saying: “I wasscared. I saw a yellow ‘z-z-z’sound.” This was confusing, until I realised he had cross-sensoryperception.

Those with synaesthesia may beable to see sounds, or smellcolours, or taste shapes, or feelsounds on the skin, or hear colours.Some people may forget the nameof a person they know butremember the colour, taste, or eventhe temperature of the name.

There are many different types andvariations of synaesthesia. In two-sensory synaesthesia, stimulation ofone sense triggers perception in asecond sense. So, someone maycomplain about the ‘sour taste’ of aneighbour’s voice. This can happenwith other combinations of senses.

In multi-sensory synaesthesia, morethan two sense are involved. That’swhen it gets really complicated! A child may experience the taste of a sound, while simultaneouslyseeing the colour and experiencinga tickling sensation on the skin.

Usually, synaesthesia occurs in onedirection only, so although you mayfeel a sensation on your skin whenyou see something, the sensation oftouch won’t trigger a visualexperience.

On the rarer occasions whensynesthesia does happen in twodirections, it can cause a personquite a bit of suffering. They canexperience stress, dizziness andinformation overload. Because of this, they may avoid noisy orcolourful places, and may withdrawcompletely.

When my son is in a state ofsensory overload, his synaestheticexperiences aggravate his conditionand it can lead to ‘panic attacks’and aggression. Once, he explained:“In the shop I heard ‘black’ then theword broke down into pieces andthey entered my eyes. I becameblind because everything wasblack.’

At the time I was bewildered withthis, and placed his ‘reports’ into thecategory ‘confusing’. But in 2011 I came across an account by BrianKing, a social worker who is on thespectrum himself, as well as thefather of three autistic children.

King reported that when he islistening to someone speak, he cansee each word; words scroll throughthe air in front of him. If someonerepeats a word in a conversationBrian sees it in a darker colour; and if his communicative partneremphasizes that word whilespeaking, it literally jumps out at him in 3D.

So Alyosha sees not only colours inresponse to sounds, but also wordswhen he hears them. If he sees the‘wrong word’ (or as he says his‘eyes see the wrong word’) we areall in trouble. His panic attack is notfar away, and the consequencesmay be unpredictable.

One of my earliest experiences ofsynaesthesia was during myteaching days at the day centre forautism which I founded in theUkraine. I brought some colouredalphabet blocks into the classroomfor some fun learning. But sevenyear-old Lena definitely didn’t thinkthis idea was much fun. She

grabbed a block and threw it acrossthe room.

“The colour is wrong! ‘C’ isn’tyellow, it’s brown!”

Synaesthesia can indeed involveletters, words or numbers beingexperienced as colours. Sometimesnumbers are experienced as shapesor forms. In the fascinating bookBorn on A Blue Day, autisticmathematician Daniel Tammetdescribes experiencing numbers ascities which he can walk through.

There are still more puzzlingvariations. Even abstract concepts,such as maths problems, can beperceived as shapes or colours. So,the answer to 6 + 3 may be ‘green’!

Interestingly, synaestheticexperience is individual; forexample, among people who seecoloured sounds there is noparticular colour that is universallyheard for each sound.

This mysterious condition is noteasily detected because manyautistic children with it don’t realise

that other people don’t share thesame experience. To them, it’snormal. Even very articulate adultswith autism find it difficult to expresstheir experiences when they are sodifferent from everyone else’s.

For many, though, synaesthesia canbe a distinct advantage. The artistKandinsky famously had thiscondition and contemporarycelebrities such as Pharrell Williams,(whose hit Happy he reports is‘yellow with a hit of mustard andsherbet orange’) also use it forcreative purposes.

If it’s puzzling for us to understandsynaesthesia, what must it be likefor autistic people to understandus?

It must be so confusing - why can’twe see a range of colours in a noisyenvironment, and words floatingbetween us?

Editor’s note: Tim Tuff, who worksfor AuKids, ‘sees’ words when hehears them and they have the abilityto cause him pain or discomfort.

Olga Bogdashina is aninternationally renownedresearcher and lecturer in

autism and the author of bookson sensory perception, the

Theory of Mind, communicationand spirituality in autism. Herautistic son Alyosha, 28, is theinspiration behind her career.

The World With AnExtra Dimension

Belong to a charity or voluntary group? Order ten or more copies of AuKids and get 20% off. Go to www.aukids.co.uk AuKids magazine, Summer 2016 13

Established in 1975, the Hesley Group provides specialist support through its schools, colleges and adult residential services with a highly experienced and expert multidisciplinary educational, care and therapeutic staff resource, in high quality purpose built settings. We’re focused on positive outcomes and progress towards sustainable independence.

For one of the young people we care for at Hesley, the thought of going to the shops to stock up on weekly groceries was unthinkable. A constant challenge for him, his parents, his previous care providers, but not us.

There were many diffi culties to overcome. It wasn’t easy, but we got there by fi nding effective and innovative coping techniques.

The young man who wouldn’t step foot in a supermarket now shops for himself.

Find out more about our schools and colleges visit www.hesleygroup.co.uk or call 0800 0556789.

This isn’t just a tin of beans. It’s a milestone. A massive victory. A success story in tomato sauce.

got there by fi nding effective and

groceries was unthinkable. A constant challenge for him, his parents, his previous care

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Smart Kids With Autism…

Understand ThemselvesThey’re aware of what their autismmeans to them, know their strengths andchallenges and have a range of copingstrategies. Through home and schooleducation, they develop anunderstanding of how their ownbehaviour impacts on others.

Understand BullyingThey are taught the difference betweenan innocent mistake and being targetedand this helps prevent over or underreporting.

Understand Social CuesAre able to recognise warning signals inthemselves and others. They have self-calming strategies and know when towalk away from a situation, or what tosay when provoked. This comes withgood intervention from speech andlanguage therapy and also at home.

Can Deal with ProvocationIf violent outbursts when provokedcause knock-on problems, schools canfocus on rehearsed ways of dealing witha situation, with strategies, a structureand visual prompts.

Smart Peers...Are Educated in AutismHave an understanding of what autism isand why their fellow pupils behave incertain ways.

Are Encouraged to HelpIt’s not just the Teaching Assistant doingall the supporting (which can lead toisolation), it’s peers being encouraged tosupport each other and being rewardedfor doing so.

Can Identify and Report BullyingThey are part of a zero tolerance culture.

Celebrate DifferenceIn a school environment, it’s all aboutfitting in with the crowd. If peers are tocelebrate difference, then individualityneeds to be identified as a strength.

How Smart

Schools Stop

Bullying

It will come as no surprise that researchshows pupils with autism are far more likelyto experience bullying at school than otheryoungsters. But the actual figures makeshocking reading. One study reported theprevalence rate at an alarming 94%*. So howcan schools, parents and pupils themselvesreduce this dismal statistic? Here’s how…

Smart Parents...Spot Early Signs of BullyingMissing clothes, equipment or money;bruises or scratches; being reluctant to go to school; appearing stressed orshowing an increase in obsessional orrepetitive behaviour; showing a poorerstandard of work or difficulty sleeping.These are just some possible signs thatshould be investigated further.

Are Open with SchoolReport behaviour changes at home atthe first sign of trouble and have a chatwith school, keeping an open mind –school may not be aware.

Keep in TouchJoint strategies and consistency can be very helpful and a good knowledge of school’s interventions, plus a trustingrelationship, is key to adaptingstrategies when things get tough. Sokeep writing in the home school diary, oremailing your child’s Teaching Assistant,even when things are going well.

Teach Kids to Identify TheirEmotions... by talking about feelingsas they’re being expressed.

Build Self Esteem... by showingthem how their autism can help themand recounting stories about successfulpeople on the spectrum. Spotting andpointing out their skills and praisinggood social awareness.

Listen RegularlyCreate a space in the evening where thechild with autism talks about their day,whether it’s been good or bad.

BACKCHAT: Humour andresilience can deflect bullies.They are only interested inpeople who take it to heart.

Yeh I know - great isn’t it?!

15AuKids magazine, Summer 2016Belong to a charity or voluntary group? Order ten or more copies of AuKids and get 20% off. Go to www.aukids.co.uk

Reduces Risks“No school can stop bullying entirely,”says Gareth Morewood, Director ofCurriculum Support at PriestnallSchool in Stockport. “What we can do, however, is put strategies in placeto significantly reduce the risk of ithappening”. This means predictingwhere and why it can typically occur.

Educates Other Pupils in AutismThrough whole school assemblies,peer talks and life education lessons,they give a detailed explanation ofwhat autism is, why pupils may behavethe way they do within the schoolenvironment and the support that theyneed in order to ‘create a level playingfield’. This prevents jealousy andisolation. One study showed that evena basic explanation had a profoundlypositive effect on whether childrenwere likely to befriend a pupil withautism**.

Gives Other Pupils a ClearUnderstanding of What’sAcceptableSmart schools constantly promote zerotolerance to bullying and give regularreminders of what unacceptablebehaviour towards others is, so thatchildren are able to identify and reportbullying.

Has Anonymous Methods of Reporting BullyingA bullying box, for instance, canencourage secret reporting of incidents,although it shouldn’t be used as soleevidence.

Prevents IsolationBy providing lunchtime clubs,buddying schemes or friendshipbenches where children can sit if theyneed someone to play with. Someschools have a Circle of Friends, a small volunteer group of pupilsidentified to help autistic pupils withsocial skills and look out for them.

Has a Culture of InclusionThis means that difference anddiversity is celebrated at everyopportunity. All pupils’ work isdisplayed and autistic children aregiven a chance to shine. For instance,at Priestnall School in Stockport,

the school has a Manga Club, in whichpupils with autism take lead roles insupporting peers to develop work onprojects and pieces of art. It also has a Lego Therapy club run by one of itsspeech and language therapists, whichis very popular.

Promotes Positive Role Modelsand Challenges StereotypesIn one school, a film of the famousautistic artist Stephen Wiltshire wasplayed, showing him drawing St Paul’sCathedral from memory. Pupils werethen asked to attempt the same in fiveminutes!

Encourages CommunicationRestorative approaches, where pupilsare encouraged to talk situationsthrough with each other with supportand structure, are more effective thanpunishment and address the rootcauses of bullying.

Identifies Vulnerable TimesUnstructured times such as break andlunchtime are catered for, by allowingvulnerable pupils to use a computer or library, or providing structuredplayground activities.

Selects Good Teaching Staffand Trains Them in AutismStaff show understanding andacceptance, are flexible and adaptiveand encourage differences – and pupilspick up on their lead***.

Jumps on Problems QuicklyYou can’t always predict a situation,but once it happens a good school willadapt quickly to prevent a recurrence.

Considers Seating PlansTeachers, rather than pupils, choosewhere pupils should sit. Pupils areplaced in the classroom givingparticular consideration to vulnerableones, who may have supportive peersplaced near them.

Has Trusted People to Turn toGareth Morewood refers to ‘corporateresponsibility’ in relation to autism,meaning that at every level of theschool a variety of adults and peerscan be approached. Pupils should beable to identify a handful of individualsthey can confide in safely.

• Bullies Out is an anti-bullying charity that offers education, training, awarenessand support to anyone affected bybullying. The organisation’s YoungAmbassador programme is open toanyone between the ages of 10-21 andprovides a vehicle for young people toget involved in its anti-bullying campaign.www.bulliesout.com

• Kidscape at www.kidscape.org.ukprovides a helpline for parents of childrenwho are being bullied.

• Beat Bullying at www.beatbullying.orghas information and advice on dealingwith bullying for children, parents andprofessionals.

• The Anti Bullying Alliance produces good materials to support schools.www.anti-bullyingalliance.org.uk

• Lesson plans for autism awareness from the NAS can be found here:www.autism.org.uk/professionals/teachers/lessons-breaktimes/lesson-guide.aspx

• The Anti-Bullying Network atantibullying.net is a Scottish organisationproviding support to school communities.

• Bullying Education Support for NorthernIreland - www.education-support.org.uk

AuKids would like to thank the following sources for their help in production of this article:

• Gareth Morewood, Director of Curriculum Support atPriestnall School in Stockport.

• Neil Humphrey, Professor at the Manchester Institute ofEducation, University of Manchester and Dr Judith Hebron,a post-doctoral research fellow at the Manchester Instituteof Education, University of Manchester. Their paper Bullyingof Children and Adolescents with Autism SpectrumConditions: A State of the Field Review was published inthe International Journal of Inclusive Education.

• Greg Loynes, Admissions, Transitions and OutreachManager, Inscape House School, Cheadle, Cheshire.

• The National Autistic Society, whose excellent andextensive online guidance on bullying, including creating a Circle of Friends, can be found at:www.autism.org.uk/bullying It includes how to tell if yourchild is being bullied, what to do if your child is the bully,bullying interventions, online bullying and how to approachthe school.

• Contact a Family for its publication A Guide to Dealing withBullying: for Parents of Disabled Children. The guide isavailable to download at www.cafamily.org.uk or call 0808808 355 for a free printed version.

Research:

*Little’s 2002 survey in the USA found that 94% of mothers of children with AS and non-verbal learning disorder reportedtheir child to have been the victim of bullying during the last12 months.

**Campbell, J.M., J.E. Ferguson, C.V. Herzinger, J.N. Jacksonand C.A. Marino 2004: ‘Combined Descriptive andExplanatory Information Improves Peers’ Perception ofAutism. Published in Research in Developmental Disabilities25 (4): 321-339.

***‘This view is supported by the research of Robertson,Chamberlain and Kasaris (2003) who found that the quality of teacher-student interactions influenced relationships, which in turn had a bearing on peer acceptance for childrenwith ASC’. From Neil Humphrey and Judith Hebron’s paperBullying of children and adolescents with autism spectrumconditions: a ‘state of the field’ review. Published in theInternational Journal of Inclusive Education.dx.doi.org/10.1080/13603116.2014.981602

A Smart School…

Further Support

AuKids magazine, Summer 2016

Six Steps to SanityThere’s a book by Naoki Higashidacalled The Reason I Jump. We’vereviewed it in AuKids and it’s a greatinsight from the personal perspectiveof someone with autism, although nota universal description of thecondition.

I’m thinking of writing my own version,called The Reason I’m Sane, apersonal perspective of the conditionknown as Being A Neurotypical Mum.

The central trait of Being ANeurotypical Mum is a tendency tothink six steps in advance. This isn’t askill I was born with, but one borne outof a need to do so in order to avertsome sort of disaster. You have tohave experienced a fair few disastersbefore you learn the Six Steps inAdvance method, but believe me whena learning curve is this painful, itdoesn’t take long.

This morning was a good illustration. I had decided to take Bobby to theuniform shop. Yes, it’s only thebeginning of June. Tip one, don’t takeyour autistic child to either a shoeshop or a uniform shop when theplace is heaving with otherparent/child partnerships.

Tip two, if you have two autistic kids,don’t take both if you can leave one athome, unless you want to make the 30second dash to the front door of theshop to rescue one whilst the other,somewhat encumbered by the narrowspace in the changing rooms, iskicking the mirror in trying to get a pair of school trousers on.

So, with Gavin at home, I had theopportunity to visit the shop with justthe one twin, even though Bobby stillmanaged to kick the changing roommirror during a decidedly off-balancemoment.

Tip three, call the uniform shop to

check it’s open beforehand. I’vemissed this step out on a couple ofoccasions, assuming in a blithelyoptimistic manner that it follows thetraditional pattern of being openduring the day. It doesn’t. It’s usuallyclosing its shutters just as I reach itsfront door.

I was three steps ahead by now, onlythe shop owner wasn’t quite used tothis and half his seasonal stock wasn’tin yet. Still, it was worth the trip, as he was the only audience memberwitnessing Bobby’s changing roommeltdown as he ‘couldn’t handle thepressure’ of being asked whether hethought these fitted any better thanlast year’s trousers.

Already three steps ahead, there was a bit more future planning to come. It’s Friday and I’m going to visit myfriend in Birmingham for my three-monthly Sanity Restoring Break.

On Monday morning it’ll be Week B inBobby’s timetable, which means P.E.,which means taking his clothes off andwithout a shadow of a doubt losing hisnew trousers unless I iron on a nametag without further ado.

Six steps in one morning – is it arecord?

It’s a bit like playing a constant gameof chess, predicting our children’slikely moves and, with head-swivellingspeed, adjusting our own actions to fit.

Well, the trousers didn’t fit after all.And I didn’t get to visit my friend,since our entire family came down withthe same 24-hour bug at the sametime.

So much for head-swivelling speed. It turns out I'm not half as clever as Ithink I am.

Think that's what you call checkmate. Want to sponsor us? Step right forward. Write to editors@aukids.co.uk

Sponsored by

16

By Debby Elley, journalist andmum of twins with autism.

The Last Word

ALECBOBBY

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