positive parenting for children with autism spectrum conditions in

dryy

Issue 24Summer 2014

£15 annuallyAvailable from

www.aukids.co.uk®

WIN Brolly Sheetsproducts worthnearly £70!

Positive Parenting for Children with Autism Spectrum Conditions

In A WhirlOur expertson spinning

Going potty? Your toiletingquestions answered

Conversation RiversNEW three-part serieson communication!

PLUS

AuKids magazine, Summer 2014

Letter from the EditorsLetter from the Editors

2

Welcome to our summer issue!

Want to read our next issue? Not a subscriber? 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.

Well, it’s been busy! In May, it was ourmuch anticipated (by us, anyway) trip toGibraltar. Tori, Debby and our Ask theExpert panellist, occupational therapistBreanne Black, addressed the island’sfirst autism conference aimed at parents.As a result, we now have some newGibraltarian readers, so welcome to youguys!

In terms of autism provision, Gibraltar,which is British, is quite far behind theUK. We have access to so much moreregular support here, not to mentionconstant opportunities to hear topinternational speakers and hop on boarduseful seminars. We really are lucky, let’snot forget it.

The group of parents who hosted us inGibraltar have formed a new charity toplug the gap in provision over there,called Autism Support Gibraltar. Togetherwith occupational therapist JanineGaduzo, who invited us out there, theyhave built something really special. All ittook was passion and enthusiasm andhey presto, they’d organised themselvesa conference. It’s a great lesson in whatcan be achieved by just a small group offriends wanting to make a difference.

If you’ve formed a new support group orwant to give a mention to one, don’tforget that’s what our Facebook site isfor!

Thanks to our hosts we managed tosqueeze in a tour of Gibraltar before theconference, and met their famousBarbary Macaques. They’re very cute butnot always so friendly if you haven’t gotfood on you, hence this pic of Tori tryingto charm her way into this monkey’scomfort zone (and failing completely).

In other news, Debby’s blog has beenrenamed Spectrumite Mum (check it outvia our website) and we’ve added somenew slogans to our T-shirt range.

Cineworld cinema at Grand CentralStockport has taken a particular shine toAuKids - so much so that they’vedisplayed this poster for us outside theirautism friendly screenings. ThanksCineworld!

We look forward to updating you in theautumn.

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

EDITORS:Tori Houghton and Debby Elley

PHOTOGRAPHY:Front cover photo taken by David Laslettat www.manchesterphoto.com m: 07918 155362

PRINTING:R and P Printers, Dukinfield

GRAPHIC DESIGN:

www.periscopestudios.co.uk

Whilst the products and services advertisedin AuKids are recommended to us byreaders, we are not an industry inspector orregulator. We advise readers to seekindependent advice from regulatory bodiesbefore signing up with a new serviceprovider and to check that products andequipment meet with industry standards.

The opinions expressed in AuKidsmagazine are those of the contributor.Please seek medical advice beforeembarking on any therapy or behaviourintervention. All articles are copyrightAuKids.

e-mail: [email protected]

Specialised servicesexclusively designed to meetthe needs of young peoplewith autistic spectrumconditions and their families.

OUTREACH SUPPORT:For individuals aged 5-64.

FULL TIME AND SHORT BREAKRESIDENTIAL SERVICES:For young people aged 5-17.

PARENT SUPPORT FORUMS:Providing advice, resources and thechance to meet other parents/carers.

CYGNET’S OTHER AUTISMSERVICES INCLUDE:

Springside South West,Exeter: Outreachsupport services.

The Springs Community,Kent: Residential care forindividuals aged 16-64.

The Springs Unit,Harrow: Secure inpatientcare for adult males withautism & Asperger’s.

For more information on any of our servicesplease visitwww.cygnethealth.co.ukor call Cygnet Central:0845 070 4170

For more information contact Saskia Little, AdministratorTel: 0161 443 4060 Email: [email protected]

Cygnet Health CareAutism and Asperger’s Syndrome Services

For more details & to discuss you child’s needs, call uson 0800 996 1760 email us at [email protected]

or visit www.starfishschoolofswimming.co.uk

Providing professionalProviding professionalswimming lessonsswimming lessons

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Providing professional swimming lessons in the Oldham & Rochdale area.Specialising in children with additional needs and disabilities.

Providing professional swimming lessons in the Oldham & Rochdale area.Specialising in children with additional needs and disabilities.

S

TICKLED PINK: Co-Editor Tori Houghton (2nd from left), Co-Editor Debby Elley (far right), Breanne Black (4th from right) and the team at Autism Support Gibraltar.

Photography courtesy of The Gibraltar Chronicle

Melinda Balatoni, Batsheva Kaye,Nicola Naylor, Paula McClinton, NicHadley, Judy Newton, Mandy Potts,Lee Guard and Rejharne Nesfield.Aiden the teddy was hiding at thetop of Page 10 in the little boy’shand.

COMPETITION WINNERS FROM ISSUE 23

Tori &Debby

Jaxon Cooper


3

Send your letters and images to [email protected]

Rayaan

Cover Star

Age: 6

Diagnosis: Autism, Epilepsy, Non-Verbal

Where I live: Trowbridge in Wiltshire

Jaxon’s mum says: He may not be speaking yet but

using PECS with his gorgeous smile and happy nature

gets him a long way. He is very affectionate and loves a

cuddle. Every now and then when he’s a little sad he

comes to you for an emotional recharge and then he’s

off again with a glint in his eye and a grin to melt hearts.

He’s a star because he has just progressed to ‘I Hear’

using PECS and he is sitting and focusing for longer

periods at school, well done Jaxon!

He loves going on car journeys, his

iPad, crisps and watching cleaning

product adverts over and over! He

dislikes losing the TV remote, and

trying new food!

Send your celebrity details

to [email protected]

Admiring Autism is aphotographic exploration into

the world of autism, the

brainchild of Chester-based

photographer Sara Jane

Dunn, whose son Frank, aged

two, has autism.

This year, Sara will live for two

days with 15 families who

have children with autism,

photographing them as they

go about their daily lives.

Admiring Autism is a not-for-

profit, social documentary

campaign, which hopes to

raise awareness about autism

through photography.

You can follow Sara’s project

on Admiring Autism’s

Facebook page or look up

www.admiringautism.co.uk

Sara is currently seeking a

grant from the Arts Council

and donations viaCrowdfunding sites to

continue and expand her

work.

We loved this photo of Sara’s

son Frank and his cousin

Mischa sharing a moment of

joy.

Sara says: “I asked Mischa,

can you tell Frank is a little

different from other children

his age?”

Six year-old Mischaresponded: “Well, yes. He

likes to spin a lot and

scrunches up his cute face to

look at the wheels and looks

like he’s concentrating a

lot...he looks very serious, ha

ha. Other children would hold

it further away and maybe not

spin as much. But I love him

because he is special, he is

different, he is my cousin. He

makes me laugh so much.” Frank and Mischa

I like: Goingon car journeys.I dislike: Trying

new food!

READERS’ PAGE

Dear AuKids,

I am a full time teacher who recently wason a conference which you attended. Icraft part-time and create items to raise

awareness of autism. These include mobilephone cases from £12, iPad cases from

£20, iPod cases from £12 and a range of bags, brushes,hair accessories and other gifts.

I raise funds for my local autism support group, LoveAutism in the North West, based in Wigan, and amin the process of setting up charity registration withthe National Autistic Society. I don’t yet have awebsite but you can find my work on Facebook atUnique Pieces by Stacey. You can find the supportgroup at www.loveautism.org.uk/northwest.php -Twitter @LoveAutismNW - Facebook LoveAutism.

All the best, Stacey Halliday

Phonecase

Rayaan is 4 (nearly 5!)and lives in Longsight,Manchester.He is into cars andtransport. Hisfavourite cars areAudis and Disney'sLightning McQueen.He loves FiremanSam and is good with

technology - heknows how to work a mobile phone andvarious tabletsincluding iPad.Heenjoys the outdoorsand McDonald's. His favourite foodsare fish fingers andcheese sandwiches.

PlaytimeI love to sit and watch Josh and Rosie play,It’s something that I love to do every single day.Although it’s unconventional and in their own way -I love to sit and watch Josh and Rosie play.I tell Josh to throw Rosie the ball,So he drops it right by her foot, where she is lying in the hall... “That’s not quite what I meant,” I say with a smile;I think for him to do it conventionally will take quite a while.But why does it matter how they choose to play?

Who is to say what makes the right way?So for now I’ll just sit back and enjoy My son and his dog playing withtheir toy.

By reader Gemma Wilkin

Josh and his

dog Rosie

This is a great little book for kids on thespectrum and their parents. It usesCognitive Behaviour Therapy to help achild become more flexible in theirthinking. Each colourful cartoon illustratesa scenario at home or at school. Thecentral character, who talks about hisexperiences in the first person to helpreaders identify with him, shares his rigidthoughts with the reader and how theselead to bad feelings when things don’t go

as planned. In each case, he repeats thathe needs to find his ‘brain-poline’ – abrain trampoline in rainbow colours wherehe can jump from black and white into therainbow in between. After being mentallyflexible, he solves his own problems byfinding suitable alternatives. Ideal for agesseven and up, the author has madecognitive behaviour therapy into a reallyfun little book that’s easy to get through,reinforces the same messages repeatedlyand is highly positive. There’s a great littlesection at the end for parents, with furtherexercises and games to encourageflexible thought.

My ten year old son Bobby read it andsaid ‘I really loved it! I loved all the coloursand the rainbows. Now all I have to do isdo what it says!’

Debby ElleyCo-editor

A Week of Switching,Shifting, andStretching: How toMake My ThinkingMore FlexibleBy Lauren KersteinPublished by AAPC

RRP £13.95

ISBN 9781937473891

The Disappointment Dragon: HelpingChildren Including Those with AspergerSyndrome to Cope with DisappointmentBy K.I. Al Ghani • Published by Jessica Kingsley

RRP £12.99 • ISBN 99781849054324 (Hardcover)

A while back we reviewed Social SituationStories by the same author and it’s still abook I’d highly recommend. This newversion takes the same format butincludes stories to explain tricky times thatcan be adapted to suit your ownpurposes. It’s worth pointing out that thesearen’t Social Stories™ in the same senseas the ‘official’ ones that Carol Graydeveloped. They aren’t quite the sameformat, which is why they’re referred to as‘social situation stories’ instead. They stillexplain situations calmly and clearly,

highlighting only the most importantinformation and making tough times a littleeasier to understand for autistic children.

All sorts of school issues are covered,including what to do in sudden changes ofroutine such as supply teachers, forgottenlunchbox, someone new in class, movingschools and wet playtime. Home issuesinclude the very hardest of situations –divorce, illness and death.

As in her previous book, Alison has reallythought this through from a child’sperspective, with plenty of commonsituations covered that will help parentsand teachers to give a primary schoolchild comfort and direction. I particularlylike the advice boxes after each story,focusing on what a parent or teachercould do to support the child around thesituation story itself.

Debby ElleyCo-editor

4 AuKids magazine, Summer 20144

This is a great therapeutic story book whichcleverly conceptualises the feeling ofdisappointment as a dragon. The‘disappointment dragon’ feeds off thenegative emotions expressed by a child whendisappointed. The stronger the emotions, themore ‘fuel’ the dragon has to travel to theValley of Despair.

Written by a Specialist Advisory Teacher forautism, with more than 35 years’ experiencein education, the story is based around aschool classroom and its pupils, some ofwhom have to deal with disappointing news.

Aimed at any child who may be struggling todeal with their emotions when things don’talways go to plan, the visual concept wouldparticularly appeal to children with autism,helping them to understand the feeling ofdisappointment.

This book serves as an excellent discussionpoint about coping strategies and ‘armour’that can help the children to fight off thedisappointment dragon, invite the ‘Dragon ofHope’ and travel to the ‘Mountain ofHappiness’. At the end of the story, there arenotes and discussion points with additionalstrategies to try.

I would definitely recommend this book toparents and teachers (both special needs andmainstream) to read with their children and toimplement the strategies.

Tori HoughtonCo-editor AuKids, Speech and

Language Therapist

We have copies ofThe DisappointmentDragon to give awayto THREE lucky

readers. Simply find thedragon hidden inside this

copy of AuKids magazine. Then sendyour answer to [email protected] ‘dragon’ in the subject header. Youcan also send your answer to us atAuKids, PO Box 259, Cheadle, CheshireSK8 9BE. Closing date August 31st

2014. If you don’t win, you mayhave to buy it to cope with thedisappointment!

Reviews & PrizesReviews & Prizes

A COPY!WIN Social SituationStories: Tricky TimesBy Alison HarrisPublished by Specialdirect.com

RRP £16.95

ISBN 9781906213602

Find the

dragon

Jennifer Cook O’Toole is a mother ofthree young children with Asperger’s.Jennifer herself was diagnosed withAsperger Syndrome in childhood and isthe founder of Asperkids LLC, a multi-media social education company.

The book is a bright and simple guide tomaking your home a refuge and safespot for your child where they can honetheir concentration skills, take pride intheir work and build independence.

In the chapter ‘The Place’ the reader isgiven some excellent tips and tricks for

fostering independence. Jennifer drawsfrom her own experiences and those ofher children to break down every dayroutines and chores like pouring a drinkor tidying up.

Fun photographs show ideas for inspiringyour child’s creativity and thirst forlearning. Bath time becomes a superplace for science experiments. Thegarden can easily and economically betransformed into a space to developconfidence in movement and motorplanning. A ‘Thinking Room’ in yourhome may be a retreat purposefullystocked with books and objects that willinspire curiosity and conversation.

All in all this is an easy and quick readwith some great advice about how tocreate a more organised and happierhousehold for your ‘Asperkid.’

Melissa CarrAuKids’ reader panel

The Asperkid’sLaunch Pad: HomeDesign to EmpowerEveryday SuperheroesBy Jennifer Cook O’ToolePublished by Jessica Kingsley

RRP £12.99

ISBN 9781849059312

Written by the same authorwho wrote TheDisappointment Dragonreviewed by Tori, this bookis again aimed at allyoungsters, but isparticularly good for thosewith an autism spectrumcondition who havemultiple anxieties.

This is an excellent tool forparents and teachers tohelp explain what happens

to our bodies when we feelanxious, with strategies tohelp the child alleviateanxiety.

It’s an easy read usingsimple language and tellsthe story of a young girlcalled Mabel with ASC whohas lots of anxieties. Herparents have used thecharacter Panicosaurus, anaughty dinosaur whoappears when she feelsanxious, to help herunderstand how she’sfeeling. Smartosaurus, agood dinosaur, gives herstrategies to help relievethe panic. There are alsolovely colourful illustrationsto accompany the story.

I really enjoyed reading thisand would definitely use itwith any child who isstruggling with theseissues. It also has someexcellent ideas to use athome and in the classroom,to make the schoolenvironment a less scareyplace!

Alison WaltersAuKids readers’ panel

AuKids magazine, Summer 2014 5

The author is a child psychiatristin Japan, specialising indiagnosing and treating childrenand young people with autismspectrum and otherdevelopmental disorders. It is wellwritten with an easy to readapproach, definitely a ‘sit with acuppa’ read as opposed tonotebook and pen.

The book immediately gainscredibility with the introductoryforward by the late Lorna Wing,leading consultant for autism.(sadly Lorna recently died - eds).

This is a useful read for anyonewho is parenting a child withAsperger’s/high-functioning ASC,whether they are in the earlystages of diagnosis, or want aneasy read that will inform themabout a variety of problems thatthese children face. I would also

recommend it to professionalswho are new to working withchildren who have a diagnosis ofAsperger’s or high functioningautism.

The book doesn’t go into greatdetail about the issues that thosewith ASC or their parentsencounter, but it does give asound overview. I assume it’s notthe aim of the book to give lots offacts and in-depth heavy reading,as the way it is written ensures itis accessible to everybody. It issplit into three chapters and givesenough advice and information tocover ‘What is autism?’‘Parenting’ and subjects such aspicky eaters, communicationapproaches and some usefulinformation around sensoryissues.

It is easy to flick through to find aspecific question from a parent,which could be the samequestion that has been puzzlingyou. Overall, a useful book forparents to use as a handbook -you may skim read parts initially,but keep it to hand as issues thataren’t relevant at the time maywell crop up in the future.

Beccy TimbersSpeech and Language Therapist

The Panicosaurus:Managing Anxiety inChildren IncludingThose with AspergerBy K.I. Al GhaniPublished by Jessica Kinglsey

RRP £12.99

ISBN 9781849053563 (Hardcover)

Raising Childrenwith Asperger’sSyndrome andHigh-FunctioningAutism:Championing the IndividualBy Yuko YoshidaPublished by Jessica Kingsley

RRP £12.99

ISBN 9781849053174

New online marketplaceRosyandBo.com feature gifts,products and toys for children withspecial needs and has a growingrange of autism products.

By reshaping the distinction betweenability and disability, bridging the gapbetween mainstream and specialneeds, RosyandBo.com sees the childand their family first and brings themproducts that embrace children’sneeds as individuals and great ideasto enhance the everyday lives offamilies.

We bring together all the things,everyday and out of the ordinary, thatmake family life with children of everykind - special or otherwise - easierand lovelier.

Three lucky readers have thechance to win a MagneticResponsibility Chart, worth£11.99, from RosyandBo.com.

Reinforce good behaviour and rewardchildren with a magnet on theirMagnetic Responsibility Chart.Includes 90 magnets, includingresponsibilities, positive behaviours,rewards, and blank ones so you cancreate your own tasks.

Start with just one or two tasks sothey feel successful right away, thengradually increase the number ofbehaviours or tasks. This chart willhelp to give children a sense ofresponsibility and improve self-esteem.

Win a Magnetic Responsibility Chart!

To enter simply visit www.RosyandBo.comand Sign In at the top of the home page,and from the dropdown menu ‘How didyou hear about us?’ using the ‘other’option, enter the code ‘Aukids’.

Competition closes August 31st. Good luck!


If in doubt aboutbehaviours, ask the experts,the people with autism.Read what they are sayingabout the reasons theybehave in certain ways.

If we do this, the first thingwe realise about childrenwith autism is that theirexperience of the world weshare is completely differentfrom those of us who arenot on the spectrum. One ofthe features of this is thatthe brain cannot filter outincoming signals that areimportant from what is notimportant. So the brain isbehaving like a runawaykaleidoscope, where thepattern never settles.Children (and adults) on thespectrum spend their wholelives trying to sort out thepattern of what is happeningto them (Therese Jolliffe).

There seem to be a numberof reasons that triggerrepetitive behaviours suchas spinning objects. TempleGrandin says she used tospin coins in order to cutout the sensory overload(Film ‘A is for Autism’). Onthe other hand, Sian Barronsays he turned the lightswitches on and off in orderto know what he was doing.Tito flaps his hands andgives us a third alternative:

‘I am calming myself. Mysenses are so disconnected, I lose my body. So I flap. If Idon’t do this, I feel scatteredand anxious. I hardlyrealised

I had a body…I neededconstant movement to beaware that I am alive and my name is Tito.’ (TitoMukhopadhyay, as seen on60 Minutes and YouTube(Mabry)). Tito is telling us heneeds the sensory input heis creating by flapping, inorder to know who he is.

All of these people aretelling us about the searchfor coherence in the face ofsensory overload, either bytrying to cut out some of theinput, or by focusing on asignal that is easy toprocess, because when theydo it they know what theyare doing.

It is very important not to try and stop them doingrepetitive behavioursbecause if we do, weexpose them to a situationwhere the brain simplycrashes because it is unableto deal with the amount ofdata it is being fed. Thechild is now in danger ofmeltdown, which is painfuland frightening. In order tomake contact with them weneed to join in with whatthey are doing. In this waywe can transfer theirattention from solitary self-stimulation to a sharedactivity. This approach isknown as IntensiveInteraction and basicallyuses a child’s bodylanguage to communicatewith them.

At the same time we needto take a careful look atwhat it is in their sensoryenvironment that isoverloading them andaddress these problems. It may be hypersensitivity to sound (particularlyoverlapping speech), intenselight, pattern or certaincolours, light touch, smelland taste, balanceproblems, or under-sensitivity from the jointsand muscles. It could be emotionaloverload – the child reactsbadly to praise or emotionalwarmth – or the hormonaldifficulties experienced inpuberty.

Remember, the brain worksmore effectively in a low-stimulus environment wherethere is not so much to sortout.

Ask the ExpertsAsk the Experts

Phoebe CaldwellHonorary Doctorate of Science (DSc)

Phoebe Caldwell is an expertpractitioner in IntensiveInteraction and trains

professionals, therapists,managers, practitioners,parents and carers in the

approach. Her latest book isThe Anger Box, SensoryTurmoil and Pain in Autism,published by Pavilion.

Why does myson spin things?

‘‘ ’’

Have you ever spent timewatching the flickering flames of areal fire or gazed at the ripples ina pool of water? How did it makeyou feel? Many people describethese experiences as veryrelaxing or calming, a way to tuneout for a while and shut out theoutside world.

Perhaps spinning provides similarsensations for people with AutismSpectrum Conditions (ASC)?Sometimes the world can seem avery busy and overwhelmingplace with so much going on andso many individual stimuli toattend to. This may be especiallythe case for people with ASC whoare often exquisitely able tonotice very small details in theirenvironment and are thereforeprocessing even more informationthan those of us without ASC.

When these feelings of beingbombarded with informationoccur, perhaps focusing onsomething predictable andsoothing, like a spinning wheel,provides the respite needed in abusy, booming world.

We know that people with ASCsometimes find uncertainsituations difficult to deal with.Imagine how uncertain the worldmay seem if you are really goodat noticing the tiny details of yourenvironment, picking up on thetiny changes that pass most of usby. One thing you might do in thissituation is to engage in anactivity that provides certaintyand predictability in an uncertainworld – spinning may do just that.

It is likely however that there is noone single explanation for whypeople with ASC seem to enjoyspinning objects, the reasons willdiffer across individuals and mayeven differ within individualsacross different situations. Onoccasion, engaging in spinningmay be a method of managinghigh arousal or anxiety byinstilling a sense of calm. Onother occasions it may be a wayof self-stimulating to avoidfeelings of under-arousal orboredom. Spending some timeobserving when spinning occurs,what precedes it and whathappens afterwards will providesome insight on an individuallevel.

Photograph courtesy of Admiring Autism - www.admiringautism.co.uk

Dr Jacqui RodgersC.Psychol, AFBPsS

Senior Lecturer, ClinicalPsychology, Newcastle

University

AuKids magazine, Summer 2014 7

Do you have a question for Ask the Experts?E-mail us at [email protected]

Repetitious behaviour orrepetitive motor action is verycommon in people with autism.

It’s often called ‘perseveration’and is described in thediagnostic criteria for AutisticSpectrum Conditions. Examplesof repetitive behaviours includespinning objects, flickingobjects, hand and fingerflapping.

Repetitive behaviours rangefrom inflexible interests to selfharming actions such as headbanging.

Some children’s repetitiveactions are constant, whilstothers only ‘perseverate’ whenstressed, anxious or upset.

From an OccupationalTherapist’s viewpoint, we usuallyuse approaches to help sensoryintegration. People can userepetitive behaviours to helpthem self-calm when they’refeeling excitement, anxiety orfrustration. So it’s important towork out the purpose of thebehaviour as far as he’sconcerned. Think about thesequestions:1. When does this behaviouroccur?

2. How often does it occur?3. At what point does it stop?4. What positively reinforces thisbehaviour e.g. It helps himfeel calm?

5. Is it harmful to himself orothers?

When you’ve identified thepossible reason for the repetitivebehaviour, you decide whetheryou’re happy for it to remain.You may want to replace it withalternative sensory strategiesthat can help him to stay calmand self regulate.

Alternative sensory strategies:The following are all strategiesthat occupational therapists willuse to help a child remain calmbut alert and focused:• Jumping on the spot, jumpingin different directions, running,skipping, if possible the use of

a mini trampoline.• Obstacle course activitieswhich use handstands,wheelbarrow walks, rolling,rocking, swaying and smallamounts of spinning.

• Swings, a balance beam orseesaw.

• Vestibular games such as the‘washing machine’: hold handswith outstretched arms, leanbackwards and spin aroundlike a washing machine.

• Rolling like a log, arms abovehead: encourage the child tograsp a small ball betweentheir knees at the same time.

• Jumping side to side over askipping rope (if they can)

• Bouncing on a gym ball• Marching on the spot• Jogging and running

Calming strategies include:• Rocking• Row Row Your Boat games• Deep pressure / massage• Use of bespoke chewy items• Use of crunchy food• Drinking through a straw• Activities which involve push,pull, lift and stretch.

• Use of weighted items, suchas lap pads, back packs.

• Discrete strategies such assitting on your hands.

• Hand squeezes and wallpushes.

• Use of fidget toys which offerstretch and resistance

• Application of deep steadytouch pressure by placing aheavy hand on the child’sshoulders or allowing the childto have a fluffy toy they canhug tightly.

• Wrapping the child tightly in a blanket can also have acalming effect. This can bedone as a game e.g. makingthe child into a ‘hot dog’.

• Have the child lie on their backand encourage them to copymovements such as angels inthe snow/sand. You can alsostand opposite the child andask them to copy your armand leg movements, thisshould be done slowly.

• Encourage the child to listen toquiet or environmental soundmusic.

• Have the child rock slowlywhilst listening to music or astory.

These are just a few examples of strategies which can beintroduced in order to replace arepetitive behaviour which mayhave a sensory base.

The most importantconsiderations are whether thisbehaviour is harmful tothemselves or others, whetherit’s impacting upon their abilityto function or whether it’s justbeing used in order to help himcope with sensory or otherenvironmental challenges. If itdoesn’t interfere with functioningand isn’t harmful, do we reallyneed to change or replace it?

Breanne BlackBSc (Hons)

Specialist Paediatric Occupational Therapist

Cool For KidsOccupational Therapywww.coolforkidsoccupational

therapy.co.uk

E-mail:[email protected]

For me, there are two types ofspinning. When I spin myselfround, I’m unhappy. When I spinsomething else, I’m happy. Thisisn’t the same for everyone. WhenI spin myself it’s when I either feelvery stressed or I feel like I’vefailed at something. It’s a feeling I can’t escape, like being in atunnel. It feels like I can’t moveand to spin means that I’ve gotroom to move - it physically shiftsme out of an emotional trap. It isas if my brain has got stuck onpause and the spinning moves iton. My ‘bad’ thought is always onmy left hand side, so if I spin inthe other direction I can knock itout.

As much as I’ve spun it out, it’sstill there until I can communicate

it. With the AuKids team, wefound that if I draw the upsettingimage and then throw it away, ithelps. Debby and Tori also gaveme a mood diary and I monitormy moods with stickers each day(plus little notes on what causedthem). This helps me to getperspective (I can see a badfeeling only lasted part of the day)and the feelings don’t build untilthey take over. It means someoneelse can also see when badfeelings are starting to build.

I know someone with autism who draws a picture of her badthoughts and sticks it onto a ball.She then hits the ball against awall so many times that shedestroys the image. And becauseshe’s focused so much ondrawing it, it really feels forgotten.

Happy spinning is totally different.For me it’s because I likesomething and I want to have it constantly in my head. Thespinning action helps me to keepthe happy thought going, itcreates a ‘loop’ in my brain.Focusing on something I likestops anything unpleasant gettinginto my head. All people havedistractions when they don’t likedoing something. It’s my way of‘being away with the fairies’ asneurotypical people would say!

Tim TuffAutism advocate, AuKidsresearcher and speaker


Can I train my child touse the potty before hecan speak?Yes! Finding ways ofcommunicating what you

want your child to do is the key.You may need visual support likepictures, Social Stories™,even demonstrating!Motivation can betricky - socialmotivation to be a ‘bigboy or girl’ often hasno impact at all.Some parents pinpictures ofmotivating interests inthe bathroom, whichcan help. So use rewards basedon special interests, rather thansocial reasons, to encouragethem.

The child also needs a system totell you that they want the toilet.This can be symbols, a sign, evena button they can press on thetoilet door (see resources).

From my experience, patienceand perseverance usuallyeventually pay off.

How do I go about pottytraining my autistic son?A few hints on where to start:

• Change the nappyin the toilet area……standing up ifpossible. This givesyour child moreopportunity to becomeinvolved in the processof toileting.

• Get them comfy on the toiletIt is so difficult to relax enough toempty your bladder and bowel ifyou are worried about fallingdown the toilet, or your poo isgoing to hurt. Potty chairs canmake the child feel morecomfortable. Toilet seat inserts aswell as steps can also be useful(see resources).

• Be aware of sensory issuesWe know that children with autismcan have sensory issues to dowith the noise of flushing toilets.In Phoebe Caldwell’s book TheAnger Box, she says ‘A child whocannot bear the noise of a toiletflushing but loves horses, is

reconciled to the soundwhen her motherpastes a largepicture of a horse’shead on thecistern’.

• Get them awareof what their bodyis telling themWork on theirunderstanding of the

concepts of wet and dryin general. Then help your child tospot the difference between wetand dry nappies/pull-ups/pants.

• Get into a timed routineRecognising the need to go tothe toilet can take a while.Timed toileting is the best placeto start. If you always take themat a certain time, you canprevent moments of tensionwhen you are asking the childto stop a favourite activity.

• Be aware of their routineIt may sound blatantly obvious,but if you toilet your child when

he is more likely to weeor poo, then you standa better chance ofsuccess – so make achart. Put some goodquality kitchen roll intothe nappy and checkit every hour to markthe time.

How do I move on from promoted,

scheduled toileting to mylittle boy asking to go?

This can take quite awhile to develop. Help

your child by telling them howyou know that they need a wee

or a poo, e.g. “When youdo your ‘wee dance’ itmeans your wees areready to go in thetoilet,” or “When youcrouch behind the setteelike that, it usually meansyour poo wants to go inthe toilet, let’s go and try”.Making up a story about the poos‘going to the poo party in thesewers’ has helped a fewchildren.

Also ask them questions aboutwhether they get a feeling in theirtummy before they need a poo.

As a general rule, if the child ismostly dry with promptedtoileting, the sensation of beingwet or soiled feels different tousual, rather than at the start ofthe process where it is aneveryday sensation.

When I triedmy three year

old son without anappy he didFIFTEEN wees in an hour and never

seemed to noticeuntil it was coming out ofhim. Is it a physical problem?Or does the autism alwaysaccount for this?

Usually the bladder is fairlymature by the age of five -

if your 3 year-old is weeing sofrequently, it may be that it is justtoo soon to try.

Other causes of such frequentweeing could be:

• Drinking a lot. Between 6 and 8drinks spread evenly throughout

• The Potty Journey by JudithCoucouvanais (AAPC publishing). Suzie’s Toilet Time –by CharlotteOlson. Fromwww.suziebooks.co.uk

• It Hurts When I Poop!: A Storyfor Children Who Are Scared toUse the Potty by Howard J.Bennett, Magination Press,(American PsychologicalAssociation)

• The Big Point button, £9 each.Record a short message on it.From Inclusive Technology,www.inclusive.co.uk

• BabyBjörn Toilet Trainer seat(adjustable) fromwww.amazon.co.uk

• Amazon sellsstickers from MyWee Friend forthe toilet - watchthe smiling starappear when thechild uses the potty.Cheap, cheerful a range ofdesigns - instant reward!

For boys, you can get targetpractice stickers for the toilet to help their aim, fromwww.toiletmarksman.com (alsoavailable from Amazon)

• If it doesn’tfreak out yourlittle one, youcan also gettoilet stickerslike this onefrom Amazon tomake your loo less daunting:www.amazon.co.uk/Smiley-Toilet-Bathroom-Sticker-Transfer/dp/B00ESK0JUO

• Washable pants have paddingand are great for that in-betweenstage. Buy them from P&SHealthcare on 0115 968 1188 orwww.pshealthcare.co.uk

• Promocon is a charity thatpromotes continence. You canbuy washable pants from them,and they also have a helpline –0161 607 8219. Look upwww.promocon.co.uk

dry

Be positive. Talkabout when yourchild will wee andpoo on the toilet,not the fact thats/he doesn’t atthe moment.

Get support with

a toilet training

plan used by all

adults who care

for your child.

Make a review

date so that you

can change tack if

necessary or wait

a while longer.

q

A

qA

q

A

q

A

dryand mighty

dryToilet training children with autism generally gets abad press. Does it deserve it? I know of a number ofchildren with autism who have been successfully toilettrained with no more effort than it takes to toilet traina child without autism. But I receive a good number of referrals for autistic children who are strugglingwith their toilet training, so here are some of the mostcommon questions I get asked.

By Anna Turner, Paediatric Continence Advisor

resources

9

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the day is plenty.

• Some drinks can makethe bladder contractmore than it usuallywould. It may be worthexperimenting to see ifcertain drinks do causehis bladder to emptymore frequently.

• There is medication thatcan help calm the bladder down,but it would be sensible to have acontinence assessment beforegoing down that route.

• There may be an underlyingreason for the bladder emptying sofrequently and this certainly shouldhave settled down by the time thechild is 5, so do ask your HealthVisitor /School Nurse /ContinenceNurse for support if you areworried.

My son gets extremelydistressed when I put

him on the loo for a poo. Why is this?

There could be a number of reasons for this and the

first thing to try would be a pottychair outside of the bathroomenvironment so that you can ruleout the possibility that it’s a sensoryissue connected with the bathroom.

A child who haspoos that causediscomfort isless likely to startto poo on thetoilet. Laxativesare often essentialto break the cycle,but the doseneeds to be right,so get professional

advice! If you aren’tgiving enough laxatives the soilingcan get worse.

It’s worth knowing also that childrencan start wetting again after havingbeen dry, or have difficulty having awee if they are constipated. Whereholding on is concerned, each caseis different and needs to beassessed by a healthcareprofessional.

Never give up! Some children

can surprise you by getting

the hang of it, even as they

get older. One 15 year-old lad

I worked with went from totally

incontinent to fully toilet

trained day and night, with

school and home working

together to achieve this.

6-8 drinks spread evenlythroughout the day isplenty - a 4 year old maywell only need 150mlsper drink, whereas a 7year old could manage250mls at a time.

q

A

BYE!

If I borrowed the TARDIS, I’d goback with a huge ‘thank you’message to my parents. Incountless ways, they gave me thefreedom to be myself and this hasled to confidence in my adult life.

The most helpful thing they did wasto allow me to do exactly what Iwanted. Not in a spoilt kind of way,but there was never any pressure todo well at school, no expectation togo to university nor any hurry toleave home and get a job.

My parents only - and verygenuinely - wanted me to be happy.Whether that happiness came frommy daily newspaper round, my fouryears at university, or the renovationof their lovely garden in order tobuild myself a gym so I couldindulge in weightlifting (my specialinterest) in the privacy of my ownhome - my parents were cool withthat.

My dad has always (grudgingly!) putup with my insistence on having asmany cats as possible. He does notlike dogs but he puts his reluctanceaside, always giving me the choiceto have a dog, if it would lessen thestress I experience from dailyautistic challenges.

I would go back to thank my mum,who has the patience of a saint, forall the times she has been there toanswer my “Why...?” questions. Formost of my life, we have had ourchats while she’s in the bath. She’snever had those ‘Five Minutes’Peace’ (as in the children’s book!).Instead, she is selfless, caring, andwilling enough to answer, at length,the questions that each dayprovides me with. There are alwaysquestions. It is partly because I lack‘theory of mind’ and partly becauseI exist on facts, logic and reason,over emotion and opinion.

I would tell them that I have alwaysbeen grateful that they were flexibleand laid back enough to accept thatmy meltdowns were (and are) just apart of me which should not befought.

I absolutely cannot stand the smellof bananas so I am appreciativethat they no longer eat bananas inthe house. I try very hard to keepthe house as clean and tidy aspossible!

“I would go back tothank my mum, who hasthe patience of a saint,for all the times she hasbeen there to answer my ‘Why...?’ questions”


Here we are, us parents, doing our very best to make life happy forour kids. In twenty years’ time, maybe our grown-up offspring willsit us down with a coffee and tell us all the things that they couldn’texpress when they were little. If only an older version of them couldtravel back in time to 2014, what would they be telling us?

We gave four adults on the spectrum an imaginary TARDIS. We askedthem to travel back in time. What would they tell the adults aroundthem? N.B. For nerds: Yes we know you can't go back along yourown timeline, call it creative licence...)

TIME TRAVELLER 1:

Alis RoweAlis, aka the girl with the curlyhair, is 25 and has AspergerSyndrome. She is an author and

founder of the curly hair project.www.thegirlwiththecurlyhair.co.uk

TIME TRAVELLER 2:

Emma WoodrowEmma was born in 1953and has autism. She workedin mainstream teaching, then

as a special needs teacher,before becoming a lecturer and

counsellor and is now researching autism. Shewants to use a TARDIS to put into words how shefelt as a child…

This is how it is. I know what I know and what I want to do. I just want to get on withthings my way, in my owntime. I am me. Please listen to me.

Do not let anyone tickle me.They call it tickling. It hurts. I hate it when they put theirfaces up close to mypushchair. It frightens me.That is why I bite them. I donot know who they are. Theysmell strong and make loudnoises.

Don’t make me stay in theroom with loud things likewashing machines. I won’t get over it. I just need to besomewhere safe, curled upright inside my bed orwardrobe.

If I scream at rough towels or smooth or bobbly clothes it isn’t to upset you. It isbecause those upset me.They make my nails ache.

Just what is wrong witharranging things or countingin fours? Please don’t move,throw out or give away mythings without consulting mejust because they look likerubbish to you. They are mycollections. What is wrongwith carrying things around?Just give me enough pocketsor a rucksack, then it won’tbe any problem for you. Theyare my things and they makeme feel safe and give mesomething interesting to do.

I’m sorry about the fruitrotting under my bed. It wasan experiment.

What is wrong with spendingtime smelling carpets orfences or looking throughpieces of green glass? It isinteresting and much betterthan being shoved about bychildren. I don’t want to playwith them or have theminvited into my garden.

How I wished for a timemachine then; to get away,escape into adulthood ortravel to a world ruled byanimals, not people. Only, I read about that when I was11 and the pigs were just asnasty as everyone else…

Please Can We

“I’m sorry about thefruit rotting undermy bed. It was anexperiment.”

11AuKids magazine, Summer 2014

TIME TRAVELLER 3:

Paul IsaacsAuthor Paul Isaacs has classicautism and started working as an Autism Oxford speaker in 2010.

He is now an author, trainer andconsultant. His autobiography ‘Living Through theHaze: Life on the Autistic Spectrum’ was published byChipmunka in 2012.

I was diagnosed in 2010 at theage of 24. As a child I had oralapraxia (I couldn’t speak with my mouth), I have aphasias (this is a disturbance of thecomprehension and expressionof language) and also visualagnosias (seeing withoutmeaning) which are a part of my ‘Autism Fruit Salad’ (DonnaWilliams 1995, 2005).

This meant that I appeared deafand blind. I think it would havebeen beneficial for me to havehad a deaf/blind assessment tobe able to rule out whether it wasphysical, neurological, or both.

In addition, it wouldhave helped if I hadbeen diagnosedearly. This wouldhave meant that myparents wouldn’thave been blamedfor my behaviour.This would havereduced socialproblems where I lived and alsowould havepotentially changedmy route toeducation and mymental health. With a diagnosis, I probably would have ended upat an autism base or specialistschool where I could haveaccessed the help and supportthat I needed.

It would have been useful tohave a range of strategies in

place to help me as well assupport for me and my parents.

I would go back and tell themthat my form of communicationwas meaningful despite it lookingmeaningless. The noises that Imade were a way of trying tointegrate with the world which iscalled ‘pattern, theme and feel’ –a term that Donna Williams uses for people who arecommunicating before they canbe typically interpreted.

At three years old I was still ababy developmentally and I’mstill developmentally delayed inboth language and visualprocessing.

So, if I could go back in time Iwould say to adults around me:“Be open-minded, think outsideof the box and do not blame. Be happy and give positive,meaningful strategies forcommunication and integration.Be understanding of mycommunication and sensoryprofile and see beyond myautism”.

I did avoid ‘learned helplessness’during these years as my parentsallowed me to be as independentand functional as possible andsaw me as a person rather than a set of traits or symptoms,which I thank them for.

TIME TRAVELLER 4:

Mark KingMark is 33 and was diagnosedwith Asperger Syndrome just lastyear. He works as a Service DeskAnalyst for Newcastle upon Tyne

Hospitals NHS Foundation Trust.

I have always wanted to be aTime Lord. After all, it would beeasy to explain being out of stepwith society if I were merely avisitor from a different world.

Being an alien would explain whyI am very sensitive to thingsother people don’t notice, why I dress eccentrically, and whytalking to computers is easilywithin my grasp but making smalltalk to a human is not.

Any explanation in the world (orbeyond) would have helped myparents, who spent my childhoodbewildered with the alien in hisbedroom tapping away atcomputers and dismantlingelectronics. The world was veryquick to tell them who I shouldbe. My parents put tremendousamounts of effort into trying toclose the gap between myselfand ‘normality’.

They seemed terrified that unlessI fitted in I would end up alone,miserable and unsatisfied withlife. They often worried that my‘bad’ behaviour reflected badlyon them and caused themembarrassment and guilt.

Autism wasn’t in our family’svocabulary - we didn’t know ithad such an influence on me. Wecould have all lived at peace justknowing what it was that mademe different.

If I could just borrow the TARDISfor a while, I would love to goback in time, sit them both downand start with two words: Don’tPanic.

With the benefit of hindsight, I could show them that beingdifferent is actually amazing, andthat trying to get my square peginto society’s round hole wasnever going to make them or mehappy.

I was diagnosed with AspergerSyndrome last year and everytime I read up on the subjectsomething from my past falls intoplace. Diagnosis finally felt like

vindication to bemyself and I wish Icould have sharedthat with my parentswhile I was stillyoung.

I would like to goback and show themwho I am now; showthem that althoughan autistic life is aroad less travelled, it is still a road fullof satisfaction,accomplishment

and most of all happiness.

Using my time machine it wouldbe tempting to give myself a viewof things to come, too - having afamily of my own, doing a job Ilove and thriving by learning to‘own’ my condition rather thanfight against it.

Letting autistic children just behappy to be themselves doesn’tmake you bad parents. It makesparents that are out of this world.

Borrow That TARDIS?

“I would go backand tell them thatmy form ofcommunication wasmeaningful despiteit lookingmeaningless.”

“If I could justborrow the TARDISfor a while, I wouldlove to go back intime, sit them bothdown and start withtwo words: Don’tPanic.”

‘Conversation rivers’: we use theterm to describe the easy ebb andflow of a two-way dialogue. Whatif this doesn’t come naturally?Although you can removeobstacles downstream, thedifficulties that autistic peopleexperience with conversationaren’t just floating on thesurface of a river. They gomuch deeper, right to thevery heart of the autismitself.

Whilst everyoneelse may behappily punting upand downstream,some of our kids on the spectrumare sitting in their boat lookinglost, not sure how to

communicate or why. Some mightbe moving about just a little whenthey really want to. Others mightbe rowing like crazy but in theopposite direction to their boatingpartner. Then again, some mightbe rowing upstream verynicely but coming to anabrupt halt now andthen every time theyneed to changedirection.

This three-partseries will focuson how toencourage yourchild to communicate.

• ANCHORS AWAY: In the firstpart of our series, we’ll be lookingat some of the basics ofcommunication

• WE ARE SAILING: In Part Two next issue, we’ll cover thebeginnings of two-wayconversation and how toencourage it

• VOYAGE OF DISCOVERY: InPart Three we’ll be helping you tofine tune your child’s conversationskills

It’s worth pointing out thatprogression through each ofthese stages very much

depends on the natureof your child’s autismand their stage ofdevelopment. Each part

stands alone in its ownright.

Wherever your child isat, we hope that you’ll choose thepart of the series that suits thembest.

What’s This For?In our story, we’d like you to thinkof your boat’s oar ascommunication – the language weuse (whether verbal or otherwise)to get where we need to be. Justas you use an oar to paddle up ariver, language is also a tool.

The key thing to remember aboutautism is this: the fact thatlanguage can be used to getyou what you want is notgenerally apparent to a childwith autism.

Read that again, because it’smassive.

This is because they lack‘theory of mind’, or what we

like to call 3D thinking –the ability to put

yourself insomeone

else’s shoes. It’s alsoreferred to as ‘social imagination’.If you assume that the thought inyour head is already in someoneelse’s too, then you don’t have totell them a thing.

So, whereas another child mightpick up an oar, automatically susswhat it’s for and start rowing, ourpre-verbal child with autism stillsees it as just a piece of wood.They might swing it about,experiment with it – but they maynot be aware of its exact purpose.

Our first job as parents, then, is tohelp them to learn the most basicpurpose of communication; theability to get what you wantthrough sharing your thoughtswith someone who isn’t aware ofthem.

Happy But All At Sea?Initially, your child may sit happilyin the boat and not even noticethe oar. These children can bereally easy – you may hear themreferred to as ‘passive’. Passivedoesn’t mean that their characterisn’t lively, it means that anycommunication they make is inresponse to yours, not started upby them (or ‘initiated’).

Unfortunately, that may cause usto delay getting them to use their‘oar’ – they’re happy enough asthey are and we assume that theyare okay with the direction thatwe’re rowing them in.

Often we don’t make it any betterfor our kids by swimming acrossto them and handing themeverything they need over the sideof the boat. In our quest to makethem happy, we make it so easy!Yes, they’ll be content for sure,but it’s not going to help themlearn to communicate. Whathappens when you leave the boat,eh?

There may be other kids who areso frustrated at not being able toget about in their boat that theybash you about the head with theoar! That frustration, caused bylack of communication, can oftenbe positively channelled intosupporting them to use their oarproperly.

Messing About In BoatsAs you’re sitting in your boattogether, it’s important to forgetabout what’s upstream. Our firstpiece of advice is to relax aboutyour pace.

Our second tip is to avoid takingover the rowing for your child,however tempting that might be.

Let them find out about this oarthingy for themselves. Pressure tocommunicate (which autistic kidscan experience by being askedumpteen questions) is not verysuccessful with kids on thespectrum. Letting them come toyou is much more likely to yieldresults.

Your job at this point is to watchand observe. They might splashthe water, so you might copy that.They might touch the oar andmove it about a bit – you’d do thesame.

In real life, this means beingcontent to simply be with yourchild and pick up on the object oftheir interest, mirroring theirsounds and actions. Thistechnique is known as intensiveinteraction* and it’s very effectivebecause it brings you into theirworld – suddenly the little rowerrealises that they have a teammate on board.

CONVERSATION SERIES PART 1

Welcome to our firstthree-part series!When we wrote aboutSocial Stories™, wecompared the socialworld to a strange land inwhich everyone seems tohave a map except for ourlittle Spectrumites.

Well, now we’ve got to theriver in this strange land –that deep and dauntingplace where conversationskills happen. But how doyou learn them when youhave autism?

Let’s set sail...

By Tori Houghton & Debby Elley

Avoid taking over the rowingfor your child,

howevertempting that

might be.

?

12

Anchors Away!


In a 2010 study** where parentswere trained in intensiveinteraction techniques, it wasfound that the more in tuneparents were with their child’snon-verbal behaviour, the morethe child made attempts tocommunicate. The researchersused the term ‘synchronicity’.

So, the little person is starting tosee you as a partner they canwork with, rather than just aninteresting object in the boat.Rowing is a high risk strategy andthey need to feel that they cantrust you.

Gently Down the Stream…When your child showsinterest in the oar, youmight help them to dip it in the water,showing them thatif you put the oarin the water theright way, you moveforward. The minute that they aresuccessful with any attempt at all,you praise them like crazy!

In real life, this is known as‘modelling’ and it’s how weencourage our kids tocommunicate. Follow their gaze –what are they thinking, what arethey looking at? Then label thethought with a word. If they makea mistake, avoid criticism butinstead say the word correctlyagain, building their confidence.

What’s Upstream?Very conveniently, you’ve placedan inflatable frog a few feet awayin the river. Your little team mateloves frogs!

They don’t know how to get to it,though - and apassive child mightjust look at it.A less passivechild maysplash aboutangrily using theirhands.

The temptation for you at thispoint is to row quickly towards itfor them and give them the darnfrog before all hell breaks loose.But no, you’ve shown them howto use the oar and so all theyneed is the motivation (whichyou’ve provided) and a bit of aclue.

You’re waiting for them to dip theoar in the water so that you canhelp out.

Look for that small signal thatthey need your help. A glance, a gesture, a noise…

Different children will needdifferent levels of prompting. Whatwould it take to get them movingthat oar? In real life – what would

it take to get a slightlyclearer signal thatwas directed at you?A picture to point at?An attempt at the

word? A gaze ora generalgesture?

Wait for the attemptbefore diving to the rescue!

In our boat story, our parentthrows exciting things along theriver constantly. Easy to get to, a triumph when obtained, theyform part of a deliberate plot toencourage constant movement in the water.

We can use what we knowmotivates children to create thesesorts of communicationopportunities, then all they haveto do is to use the oar as often aspossible!

What sort of things can we ‘throwin the river’ to move our childrenalong in the real world? Chocolatebuttons in a box out of reach, atoy that works only with co-operation from an adult, bubbles,which a parent can produce onrequest. Any attempts to tell youwhat they need are rewarded.

And You’re Off!Wow, what an effort that was! Butonce they start to use the oar withsuccess, you can row with them,

sharing the same oar.Model the words,encourage thecommunication, rewardoften. Make it part of

your dailyroutine.Whether

they usewords, signs orpictures, the pointis that they arecommunicating. It startswith what’s called ‘functionalcommunication’ – requestingsomething.

Gradually, this moves tocommenting. As the oar glidesslightly deeper into the water, youmight notice your child’s moodand body language and then,guiding the oar along, help themto put into words what they arefeeling by ‘modelling’ the words.E.g. “LIKE the frog!” “Urgggh,don’t like the frog!”

This is how conversation starts.

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WATCH OUT FORPART 2 IN OUR

NEXT ISSUE!

*Intensive Interaction is a common speech and language therapy tool in which parentsand carers copy a child’s behaviour and sounds, mirroring and responding to them.Since it is child focused, it uses the child’s own motivation to build communication.

**Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial - Jonathan Green, Tony Charman, Helen McConachie,Catherine Aldred, Vicky Slonims, Pat Howlin, Ann Le Couteur, Kathy Leadbitter,Kristelle Hudry, Sarah Byford, Barbara Barrett, Kathryn Temple, Wendy Macdonald,Andrew Pickles and the PACT Consortium – published Lancet July 2010

Correcting focuses on what’sbeing done wrong. Modellingshows how it’s done right. Foran autistic kid, there’s a worldof difference between a parentsaying “No, not BOH – BOAT!”and “Boh? Yes, it’s a BOA-T,that’s good!”

HE HAS OAR-TISM,

GEDDIT?

Santa’s Little Helper

‘One Christmas a few years ago when my so

n was still in a buggy I had

done most of my shopping online. I just had

to get one last present for

my dad. My son was totally overwhelmed by

the crowds, noise and

decorations and started to have a very scree

chy meltdown. This was

before he was diagnosed and obviously now

I know it was sensory

overload. Many people gave us dirty looks, tu

tted at us and one

nasty old lady actually shouted “Shut him up

,” right in my face.

I ended up in tears trying to calm him down.

So there I was,

sobbing in the gift aisle of the Birkenhead br

anch of Boots,

when a fellow customer came over to me and

asked me

if I was okay and if there was anything she co

uld do

to help. The couple of minutes she spent

with me meant so much and

completely restored my

faith in humanity.’

Andie

Read Dear ‘Daddy’ in Seat 16CFlight 1850 From Philly in theblog www.goteamkate.com -It’ll bring tears to your eyes!


The Kindness ofSTRANGERSA lot of our parents get pretty worried about otherpeople’s negative reactions to their kids’ unusualbehaviour. Yet there are as many good souls whowant to help as those who are quick to judge.Here’s some positive reactions – share your ownpositive stories on our Facebook and Twitter pages!

Noteworthy Hero‘My son had a meltdown going to schoollast Friday. A lady who we didn’t knowhappened to be in the area while staff werehelping to calm him down. She produced thistiny colourful notepad out of her pocket andhanded it to him. I held my breath waiting forhim to throw it... He stuffed it into his pocket andinstantly started to calm down. That day he wrotehis teacher notes on it about how he was feelingand wrote me notes about how he’d had agood day. I saw her and was able to thankher, I don’t think she realises howmuch her kindness meant to

him and also to me,though.’ Polly

Salon Saviour‘We have a fantastic

hairdresser

who clears the salon for our son

who’s 12 with autism. She even

opened up on a day they were shut

between Christmas and New Year so he

could have a haircut. For the first time

ever, he’s had his hair cut regularly over

the last six months, and he’s calm and

she’s very flexible. She blocks off time b

efore

his appointment and time after to make

sure there’s no one else in the

salon, and sends the rest of

the staff into the back

of the shop.’Faye

Not All Stares Are Disapproving‘My son Matt and I went to Formby beach by train in a r

ain storm three

days before Christmas (his choice of course and my fault for asking

what we should do but I was rewarding a good sentence!). We got

soaked because Matt had an amazing time jumping over waves. So

we were on the train dripping wet. An elderly couple got on and

sat opposite us. Matt doesn’t sit still and talks loudly and his

speech isn’t so clear and is mostly one or two words. This

couple were staring at him and I was about to give them my

‘What are you looking at?’ stare back when the woman

asked if he was autistic, and started to tell me all

about autism in the Sixties. I didn’t get the full

story of why because we reached our

station, but sometimes people are

staring out of recognition andnot disapproval.’

Lynn

Before you go, let yourchild know where you are

going (photo if poss) and howlong the visit will last - stick to itfaithfully. Show them the rewardthey’ll get afterwards in pictureform. Keep praising them whenthey’re being quiet and patient.‘Good waiting! Well done!’

Prevent a wobbler. Go towww.autism.org.uk/living-

with-autism/out-and-about forsome preparation tips oncommon visits to doctors,dentists etc.

Have some distraction aids ready for queues.

Shameless plug: Put little ‘un in an AuKids

T-shirt with slogan (e.g. ‘I wasborn with autism, the cheekysmile is all my own work’) -strangers will get the messagequickly and positively.

Sometimes kids aredragged through an aisle

quickly when something hasfascinated them. Tell them theyhave 5 minutes to have a goodlook. If you know it will be reallydistracting, leave it till last.

If they want something theycan’t have, tell them when

they WILL be able to have itinstead of an outright ‘no’ (whichmeans ‘forever’ to an autisticchild). Make a big deal aboutwriting down the name of it andprice, saying you’re keeping it inyour special book so that youcan remember it for when it’stime to buy a present.

Bring a small towel withyou so that you never have

to go near a hand dryer!

Understand what makessensory overload for your

child. Sometimes ear defenderscan be useful because theoverload comes from all senses,and switching just one channel to‘low’ can prevent meltdown.

Be realistic about what youcan achieve with little ‘un in

tow and don’t plough on if they’redistressed. Leave as soon as youcan and sit somewhere quiet.Take a breather, you both need it.Usually things go from bad toworse without a cooling downperiod.

If the worst happens, calmyourself down and breathe

slowly. Talk in a calm and slowvoice to the child. Forgeteveryone else. An agitatedreaction and a hurried tug of thesleeve will make things worse.

Don’t try to reason withyour child once they’re

in meltdown mode; extraconversation is overload. Justuse calming phrases.

Don’t interpret someone’sglance as ‘evil’. It may just

be curiosity or concern andremember you’ll be feelingsensitive if junior is making a fuss– it’s natural.

You can buy an AutismAlert card from the NAS for

£2.50 which is a mini informationpack. Hand it over at difficultmoments. www.autism.org.uk

If someone commentsrudely, think of what your

child is experiencing andcompare it with something theonlooker is familiar with. Forinstance, ask them ‘Do you knowwhat it feels like to standunderneath a speaker at a rockconcert? That’s how he feels rightnow. He has autism and hisexperience is very different toyours.’ If you can manage it, it’sfar better to educate than to starta row. (But you can mentally tellthem where to go!).

We know this is tough– if your child is just being

generally noisy as opposed tomeltdown, SMILE! Show theworld that this is normalbehaviour for them, they’ll soonlook away. They are moreinterested in their own shopping.

Try not to worry about otherpeople’s reactions. Anyone

who takes time out to criticize aparent in a public place musthave a very sad life indeed. Thisis probably the most excitingthing they’ve done all day.

What To Do When Your ChildHas a Wobbler in Public

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Why are some of our kids so over-sensitive to touch and what can we do to help them? The answer is really complicated and extremely technical. It’d take one of those horriblylong books with no diagrams and lots of tiny words. Or, it’d take our expert OccupationalTherapist Breanne Black, a master of plain speaking - with a bit of AuKids magic thrown in.

Tactile sensory inputcarries informationfrom the body to theCentral NervousSystem (CNS).

This information istransmitted alongtwo differentpathways.

Think of thepathways as twophone lines.

The Dorsal ColumnMedial Lemniscal(DCML) phone line,we’ll call phone line‘A’.

The AnterolateralSystem (AL) phoneline, we’ll call phoneline ‘B’.

Each phone linecarries differentsensory messages.

Touch is our first language; it is the first system to develop in the womb. It’s the primary way inwhich we make contact with the external worldand a protective system which alerts ourbody to potential danger.

The tactile system is thought to be ofgreat importance when determiningbehaviour, so when things don’t workwell, it has a negative impact on howsomeone perceives and responds to theirenvironment. It can impact on behaviour,learning and all aspects of daily life.

So, touch is critical to our interaction with theworld.

Phone line ‘A’ carries primarilytactile, vibratory, touch-pressureand proprioceptive information.Proprioception is the sense ofyour own body - knowing whereyour limbs are without lookingat them. This phone line aidstactile discrimination orperception (finding the Colabottle in the pick ‘n’ mix bag inthe cinema without looking, forinstance), detection of size,form, contour and texture.

If you stub your toe on the table, phone line ‘B’ starts to transmitpain signals. You automatically rub your toe, which activatesphone line ‘A’, as the rubbing is touch pressure. Phone line ‘A’dampens down phone line ‘B’, so the action of rubbing helps todampen down the pain. Clever, isn’t it?

Does your child hate brushing their teeth? The use of amanual tooth brush with fine filaments could be interpreted aslight touch, so this information would be carried along phone line‘B’ and someone who has sensory processing difficulties mayinterpret it as painful, tickly or hot/cold.

An electric toothbrush that vibrates will dial up phone line ‘A’ (more powerful),hence dampen down the negative response of phone line B and make yourchild more tolerant of the sensation.

Does your child dislike messy play? Paint may be interpreted aslight touch, so will travel along phone line B, and may also be felt aspainful, hot/cold or tickly in an individual with sensory processingdifficulties. So try pushing hands together, squeezing hands, pushinghands against the wall. This provides deep pressure input, dialling

phone line ‘A’ and dampening down the over-protective response ofphone line ‘B’. It will help to desensitise the hands, ready for exposure totextures which may previously be interpreted as unpleasant.

AND TOUCH/PRESSURE

TACTILE, VIBRATORY

PROPRIOCEPTION

WHAT CAN GO WRONG

PHONE LINE BPHONE LINE A

Phone line ‘B’ carriesinformation which mediatespain, crude touch (that’svery light touch) tickle andtemperature.

A very important differencebetween the two phonelines is that phone line ‘A’has the power to inhibit or dampen down themessages carried alongphone line ‘B’.

Constant firing of phoneline B (carrying informationabout pain, very lighttouch, tickle andtemperature) means thatsomeone could have poorawareness of temperature,therefore struggle toregulate their own. AuKids’distributor Tim can alwaysbe seen in short sleeves,even in the snow!

Other common functionaldifficulties include ‘tactiledefensiveness’ – whentouch is incorrectlyinterpreted as being

unpleasant or harmful. It can occur when phoneline ‘B’ is constantly firinginformation about pain andtemperature, so all touch isinterpreted as one of these.

Common difficultiesinclude:• Sensitivity to touch• Dislike of labels in clothing• Overreacts to touch• Dislikes messy play• Dislikes standing in lines next to others• Dislikes walking barefoot• Dislikes teeth cleaning

TOUCH THE TACTILE SYSTEM

N.B. The Tactile System is a complex system that we have simplified here. Difficulties with processing of tactile sensoryinformation should be discussed with your child’s Occupational Therapist in order to identify appropriate strategies.

PHONE LINE B

PHONE LINE A

SIG

NA

LS TO

NER

VOU

S S

YSTEM

CNS

OUR TOUCHIMPACTS ONLEARNING,

BEHAVIOUR...EVERYTHING!

USING PHONELINES CAN HELP!

As all these difficultiesoccur as a consequenceof excess firing of phoneline B, activities whichdial up phone line ‘A’have the power tooverride and dampendown phone line ‘B’.

Activate phone line A by:• Deep pressure• Stretch• Vibration

PAIN

The Autism ‘Snob’

By Debby Elley, journalist andmum of twins with autism.

The Last Word

There are two types of autism snob.Proper snob, and inverted snob.

The ‘inverted autism snob’ representsthe type I sometimes bumped into atsupport groups when my twins weresmall. They are the ‘anything you cando, I can do better’ variety. In thiscase, though, they have the monopolyon suffering. You think you’ve got itbad? You ain’t heard nothing yet. I remember mentioning to someonethat Bobby (who at this time wasabout three) would head butt the sideof his cot, the front door and even thefloor with alarming frequency.

“You think that’s bad,” said oneparent. Well yes I do, actually, I thought. “Mine cracked her headopen and we had to go to A & E andnow she wears a special helmet.”

I said: ‘Wow that’s terrible,’ and thengave her one my best dark looks, theone that can barbecue beef burgers. Iwanted to say it, but I didn’t. I wantedto say: ‘Look, just because your kidhas a ward named after them in thelocal hospital, that doesn’t mean tosay that I’m not having a rough timeof it, too. I came here for support, nota game of trumps’.

In my view, there’s not really a placefor one-upmanship in support groups.We’re all in the same boat and ifyou’re going to start bragging abouthow your life is so much worse thaneveryone else’s then others will soonbail out on you. If you run a supportgroup where you don’t play host tothe world’s greatest martyr, then patyourself on the back.

I hold my hands up – I’m guilty of theother type of ‘proper’ snobbery, theone where you completely underplaythe autism. Sometimes, Bobby canhave a great little chat with me. But ifhe fails to perform at the top of hissocial potential, I’m liable to make outthat he’s only autistic part-time. “Ah,

this is because he’s in a newenvironment. Actually he’s brilliantwhen he’s in his comfort zone.”

Of course he’s brilliant in his comfortzone you dimwit, I later chastisemyself. That’s what autism IS.Comfortable and coherent oneminute, echolalic and disjointed thenext. Saying “He’s not always thisautistic,” is like saying ‘the traffic’s notalways this bad’ when you’re drivingon the M25 at 3pm on a BankHoliday. Anyone who isn’t aware thatautism changes according to thecircumstances probably isn’t worththe energy of the explanation.

Course, my kids always choose theirmoments to show just how far theyhaven’t come. Usually it’s when I’mboasting about how great Bobby’ssocial skills are coming along. That’swhen he’ll decide to totally blank thevisitor without so much as an upwardglance from the iPad, forcing me tocajole a greeting out of him throughgritted teeth. And, I’ll just be smilingto someone about Alec being so easyand laid-back when he’ll let out ahigh-pitched scream and hold thenote for about as long as Tony Hadleymanaged in ‘Gold’, breaking everyliving room window on our street inthe process.

I’ll mutter something about him goingthrough a phase (one that’s lastedroughly ten years) and smileapologetically as the newcomerleaves the house, trailing theirshattered eardrums behind them.

Thinking about it, none of us should be upsizing the autism ordownplaying it either. Let’s decide tobe cool enough just to shrug and say‘there are good days and bad days’,and leave our daft egos where theyshould be – relaxing on the sofaasking for neither sympathy norapplause from others.

Think green! Recycle AuKids - pass it onto someone who needs it, your local library, dentist or doctor’s! www.aukids.co.uk

ALEC

BOBBY


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