Autumn 2013

ACTION FOR ASPERGERS

RegisteredCharityNo: 1148790

RegisteredAddress: LilfordLodgeFarm,Barnwell, NearOundle,Peterborough.PE85SA

CEOofAfAandExecutiveEditor ElaineNicholson [email protected]

EditorandCreativeDirector RebekahHumphrey-Bullen [email protected]

GraphicDesignandPhotography: PaulBullen SamuelLovegrove GraceBilling

WritersandContributers: SoniaOwen JohnathonKaye RobertMann

Joinourteam.Wanted:GraphicDesigners,writers,artists,photographers.

[email protected]

2.ContactInformation

4.HighTea

7.Competition

8.HallofFame

11.Feature-University

14.InterviewwithElaineNicholson

16.Merchandise

18.Feature-Meltdowns

20.Reviews

22.WhichApp?

24.NextIssue

A rainbow array of cakes sat on tables that groaned with the weight; more cakes than anyone could eat, all richly and beautifully decorated. Jam filled scones sat, ready for eating, and meat & cucumber sandwiches disappeared as quickly as they were placed. It was a day of charity fundrasing in the sweetest way possible; the Action for Asperger’s High Tea event.

The event was put on to raise money for the Sensory Therapy Room at the Action for Asperger’s offices in Oun-del, Peterborough. An amazing total of £1709.75 was raised.

We were fortunate with the weather; it was a warm day with no rain. The event was filled with entertainment. There was a bouncy castle to entertain the children, and plenty of music.

For those who felt overwhelmed by the

noise, a tent was placed at the bottom of the garden, as a sort of make shift chill-out zone. Everything was well thought out and Autism friendly.

The event was opened by BBC radio presenter John Griff, who has had an interest in the charity since founder Elaine Nicholson came to talk on his radio show.

Talking about the event, John said:

‘I was impressed by the preparations that went into putting the High Tea event on - everyone had clearly worked very hard and there were enough cakes and scones to satisfy an army - maybe an army of Action for Aspergers sup-porters!

It was a real pleasure to be invited to come along and be part of a fabulous

afternoon in the sun - congratulations to all the performers and participants and I hope that you raise all the money you need to be able to equip the sen-sory therapy room with all the new equipment.’

The beginning of the event featured many great class duos and perform-ers. This helped to create a pleasant atmosphere.

As the afternoon progressed, the mi-crophone was opened up for anybody to come and perform. Mark and Sam (photo below) sang beautifully.

Overall, this was a highly successful event, and one which we hope will be repeated.

To find out about future events, and to donate, visit:

www.actionforaspergers.org

At University, you can study anythingfromsciencetothearts,sportstohealthand beauty. And for those looking forsomethingalittlemoreunique,youcanchoosetostudyHarryPotteratDurrumUniversity, Zombism at the Universityof Boltemore, or, for you Trekkies outthere,KlingonattheUniversityofBritishColumbia.So there’ssomething tosuiteveryobsession.

What ever your special interest andhopesforthefuture,there’sneverbeena better time to look into further and

highereducation.However,whetherit’scollegeoruniversity, it’sahardenoughlifechangeforanyonetocopewith, letalone thoseofuson theAutisticSpec-trum.

Inthisfeature,weoffertipsonhowtogetthrougheducationfromfindingtherightinstitute,tocopingwithyourstudiesandthe social life when you’re there. TheDisabilities Coordinator fromUniversityof Chichester, Steve O’Melia offers ushisprofessionalopinion.

Which University?ChoosingtherightUniversityandcourseis one of the most important decisionsyouwillmakeingettingtherightsupportthroughyoureducation.

‘It is a good idea to decide first whatcourseyouareinterestedin,’saysSteveO’melia, Disabilities Coordinator of theUniversityofChichester.‘ThenusethistoidentifywhichUniversitiesareofferingthatparticularcourse.Gothroughthecoursestoseewhatoptionstheyofferandhowtheyassess.Mostprogrammeswillassessusingexams,essays,presentations,groupworketc.Decidewhetheranyoftheseareaproblemforyouandseewhatthebalanceofassessmentisonaparticularcourse.Thatmighthelpyoudiscountsomeuniversitiesstraightaway.’

Commute or Reside?‘Oncethathasnarroweddownthenum-berofUniversities,’continuesSteve,‘youmightwant to considerwhether the dis-tance from home is important. Do youwanttocommute?Doyouwanttoliveoncampus?How farare thehalls from theUniversity?’

Halls of residence tend to be blocks orhouseswithanumberofbedrooms,asharedkitchenandsometimessharedbath-rooms,thoughyoucangetensuiteaccommodation.

‘Withaccommodationyoushouldfindouthowtheaccommodationissetuprehowmanypeopleyoumightshareakitchenwith,hownoisytheenvironmentisetc.Also,discusswiththeDisabilityAdvisorwhetheryoucangetpriorityforaccommodationtomeetyourdisabilityneeds.’

Catering isanother issue toconsider: ‘Ifyou’reaparticularlyfussyeaterthenyoumightfindcateredaccommodationcanbedifficult.’Someuniversitiesoffera largerrangeoffoodthanothers.

Youcangoself catering.Youdon’tpay formealsaspartof youraccommodationcosts,‘however,ifyouareselfcateredthenyouneedtoconsiderwhetheryoucanmanageshopping,cooking,budgetingetc.’

Do I disclose my disability?To disclose or not to disclose, this is acommonly asked question. Some peo-plemayfeelconcernedaboutdisclosingtheir disability.They feel that theymightbejudgedunnecessarilyjudged.Ortheymaybeconcernedthattheywillreceiveanegativelabelduetotheirdisclosure.

‘Disclosing your disability in advance isreallyhelpfulasitensurestheUniversityisawareofyou,’suggestsSteve. ‘IfyoudiscloseonyourUCASapplication formmost Universities will write and ask forwhatyouthinkyoursupportneedsmight

be.TrytocontacttheDisabilitySupportServiceattheUniversitytoarrangeameetingwiththemtotalkthroughyourneedsindetail.Thatoftenhelpstomakeitclearerwhatyoucanexpectandwhatyoumightnotbeabletogetbywayofsupport.’

DisabledstudentsareentitledtotheDisabledStudentAllowance,agrantavailabletouniversitystudentstosupportlearning.Itpaysforadditionalsupport,mentoringforthosewhoneedit,andequipmentsuchascomputersanddictaphones,aswellasanallowanceforprinting.

Stevedescribesthisgrantinmoredetail:‘TheDisabilityAdvisors can also adviseontheDisabledStudentAllowance.Thisistheallowance,heldbyStudentFinanceEngland,whichcanpayforyoursupportatUniversity.ItcanpayforweeklyStudySkillsSupportand/orMentoringsessions;specialsoftwaretohelpyourstudiesetc.’

Adisclosureofyourdisabilitydoesn’tmeanthatyouhavetotelleveryoneaboutit.YoucanjustlettheDisabilitySupportServicesknow,orjustyourtutors.Butitisworththedisclosure.

‘Ifyoudon’tdeclareitmeanstheUniversitycannotbeawareofwhatyourneedsare,’finishesSteve.‘However,ifyouarestruggling,youcandeclareyourAspergersatanypoint.Makingcontactwith theDisabilityServiceafteryouhavestartedcanstillbehelpfulastheycanhelpyougetthesupportyouneed.ItcanalsobehelpfultohavesomeonewhoknowsaboutAspergerswhocanbeonyourside.’

What was your inspiration to startActionforAsperger’s?

My inspiration came after 1) our second sonwasdiagnosedwithAS2)Ifeltthatthepsycho-dynamiccourse Iwason,secondyearMSc inchildren/adolescent counselling, was gearedwhollyfortheneurotypicalchild(autismtrainingaccountedforhalfaday)3)Mypersonalthera-pistdidn’tseemtobe‘gettingit’(autism)andap-pearedtobemakingseveral incorrect interpre-tationsand4)Myowndifficulties of livingwithautisminthefamily.Ifeltthatpeople(NTs)weremisjudgingmeasanindividual/wife/motherandIhadtoeducatethemaboutautism.

What’sthemeaningbehindthename?

Mybackgroundisinmanagementscience,andmarketingwasmybestsubject.‘A’isthebegin-ningofthealphabetandislikelytocomeupfirstinsearches. Ididn’twant tohide theword ‘As-perger’s’away.Howcouldwecreateawarenessbycallingit‘Elaine’swish’orsimilar.Thecharityisnotaboutme-itisaboutautismperse-Iamsimplyavehicleonwhichthecausecanride.

HowhasbeingamumofanASsoninfluencedthecharity’saims?

Being amumof anAsperger’s child (I have 2-a step-sonandmyownsonbothwithAS) isnoeasyroletoplay.YouhavetobeasoldierofthePanzerdivision,readytofightforyourchild’srightsatanytime.Youhavetobemindfuloftheirpoorexecutivefunction(iehelpthemtoorganise&executetasksetc)andgentlyaidcommunica-tionifneeded.It’slikebeingafull-timePA,but,thankfully,workingforabossyoulove!BeingamumofASladshasbeenmygreatestqualifica-tioninlife.Myups‘ndownswithmychildrenisattherootsofthecharity’saimsandobjectives.

Whatdoyouliketodotorelax?

Mygreatest love isunadulteratedsound;beinginthemiddleofafieldlisteningtonature.Hear-ingthedroneofanengineinterruptsthisandan-noysme.Thisismylittlepieceof‘heaven’away

fromourhighlynoisymodernworld.Ialsoliketoreadresearchpaperstorelax!Yes,it’strue!

What are your hobbies outsideworkingonthecharity?

Ihaveasmallbreedingcattery-Ibreedmainecooncats-Ilovecatsandkittens,andIparticu-larlyenjoyraisingthefinestkittybesticanandthensendingthemofftotheirnewownersat13weeksofage.Givesmegreatsatisfactionmak-ingpeoplehappyinthisway.

WhatareyouraspirationsfortheAfA?

That itgrowsbutnotbeyond thestateofcom-fort.Ihopetorecruitmorevolunteerswho,likeme, have both autism familial experience andprofessionalqualificationscombined....needlesstosay, that isavery tallorder! Ihope thatAfAhelpstoinformasmanypeopleasitcanaboutAsperger’sandautism,banishing ignoranceasmuchaspossible.

WhatareyourhopesforthefutureforAutisticunderstanding?

Isimplywould likeNTs to ‘get it’best theycanaboutAspergersandautism,and,bythesametoken,enableASfolktounderstandNTsbetter.Thatwouldmakeforamuchbetterworld.

Whathopesdoyouhaveforyourownchildrenforwhentheygrowup?

That they find work they enjoy and feeds intotheir special interests, and that my youngestgoestoanAsperger’sfriendlyuniversity.

WhatcanadultswithAsperger’scando now to help the next generationgrowupinamoreacceptingworld?

Don’thidetheirAsperger’saway. Itneedsstat-ing so many times. To banish shame (thereshouldn’tbeany)andbeproudofwhotheyare.Awarenessisthekeyword.Itcanbeachieved.I’mcertainofthat.

As every parent of an Asperger’s childknows,meltdownsareaninevitablepartoflife.Butwhatcausesthem?Andwhatcanyoudotohelpyourchildwhentheygointoameltdown?

What causes a meltdown?

An Asperger’s finds processing the worldchallenging.Theycanbeoverlysensitivetolight,noise,andtouch,knownashypersen-sitivity.PeoplewithAsperger’shavedifficul-tycommunicatinghowtheyarefeeling.Theresult isafloodofemotion theAsperger’schildcannotexpressorcopewith.

Commontriggersarenoisy,brightandbusyenvironments; unexpected and unplannedforchangesandhightensionsituations

What does a meltdown look like?

Ameltdowncan look likea tantrum,espe-ciallyinyoungerchildren,makingthemhardtodistinguishandevenhardertodealwith.Manyofthetechniquesusedtodealwithatantrumwillnotworkwhenthechildishav-ingameltdown,becausewhatishappeninginsidethechild’sheadisverydifferent.

Everychildisunique,andhasdifferenttrig-gersandsigns.Youwill learntorecognisethesewithinyourownchild.Somechildrenwillshoutandlashout.Otherswithdraw,be-comeunresponsiveandunusuallyquiet.

What is the difference between a melt-down and a tantrum?

Every child has tantrums. Meltdowns canlooksimilar,buttherearedifferences:

-Achildhavingatantrumwillwantyoutonotice,sowillchecktoseeifyouarepayingattention.Duringameltdown,however,thechild becomes unaware of their surround-ings, anddoesn’t carewho sees their be-haviour.

-Childrenhavetantrumstoelicitaresponseandmanipulateyou intogettingwhat theywant.Tantrumscanbestoppedbywalkingawayordistractingthechildwithsomethingelsejustasorevenmoreenticing.Amelt-down, however, isn’t as easy to console.Thechildhavingameltdowncannotbeeas-ilydistracted.Walkingaway from thechildwill not stop themeltdown either, as theyarenottryingtoperformtoanaudience.

-A child having a tantrummight threatento cause themselves harm; holding theirbreath for example. However, they wontwanttocausethemselvesactualharm,norwilltheywanttocausedamagetotheirtrea-sured possessions.A child having amelt-down, however, has lost control, and cancausethemselvesharmwithoutrealisingit.

What should I do when my child has a meltdown?

Howyouhelpyourchildwhentheyarehav-ing a meltdown will depend on the child.However,itisinefficientandunfairtotrytopunishthechild.Theyoftencannotcontrolthemeltdown,andtheydonothavetheselfcontroltocalmthemselvesdown.

ApersonwithAsperger’swilloftencontinuetohavemeltdownsintoadulthood.Theycanoften learn coping mechanisms to controlthemeltdownsbetter.Aschildren,however,theyhaven’tlearntthoseskillstohelpthem.

Themostimportantthingistoremaincalm.Shoutingjustexasperatesthesituation,andwillprolongthemeltdown.

SomeAsperger’s children like a tight hug

whileinameltdown.Repetitionofthesamewords,somethingreassuring,canbeaffec-tive too,especially if thosewordsaresaidinasingsongvoice.Gentle rocking,eithersidetosideorbackandforth,canhelp.

If the meltdown is environmental, remov-ingthechild ifpossible isonewaytohelpthem.Forexample, themeltdownmaybeinabusysupermarket.Themeltdownmaysubsideonceyouhavelefttheshop.

Forsomechildren,itisbettertoleavethemontheirownfora fewminutes. If theyarenot causing themselves harm, it might bebetter to give themsomespaceuntil theybringthemselvesoutofthemeltdown.Thiscan be the case for older children.As al-ways, it depends on your child and whatworksforthem.

The most important thing to remember isthat meltdowns are part of the condition,andinnowayreflectsyouasaparent.

RebekahBullen

Haveanythingyou’dliketoadd?Anytrickswhichhelpyou?Emailmewithyourstoryto

[email protected]

Book Review byHollyParker

Thisbookisafineexampleofmetafiction;astorywithinastory.ItfollowsmaincharacterChristopher,anAsperger’steenagerwithanobsessionwithmathsandscience.Theopeningsceneconsistsofagruesomediscovery,adeaddogwithapitchforkthroughit.Christopherbecomesobsessedwithsolvingthemystery,andhisteachersuggestshewritesacrimenoveloftheevents.HaddonhascapturedtheuniqueinsightintotheworldasseenbyanAutisic.We,thereader,areinvitedintoChristopher’sworld,sharinginhisjoysaswellashischallenges.Mathematicsfindsitswayintoeverynookandcrannyofthebook.Eventhechaptersarecleverlyonlynumberedastheprimenumbers;thefirstchapterbeingnumbered2,andsoon.ThevividdetailofChristopher’soversensitivitytothesensescouldonlybewrittenbysomeonewhohasadeepunderstandingofwhatitfeelsliketolivewithAutism.Hisdislikeofthecoloursbrownandyellow,ofbeingtouched,ofloudnoisesandbrightlights,canbeappreciatedbyanyonewhohasthecondition,andhelpstocreateapictureofwhatit’slikeforthosewhodon’t.Thisbookheldmyattention,andnotjustbecauseitisaboutanissueIholddeartomyheart.Thisisarealpageturner.Thechaptersareshort,andthecharactersarevivid.Christopher’spetratservesashiscompanion,andshowshowgentleChristopheris,despitethefactthatnearthestartofthenovelChristopherisacusedofkillingthedog.Myonecriticismisthatthisbookisnotsuitableforchildren,duetoexcessivelanguage,despitebeingadvertisedassuch.

This book is currently available as a kindle book on Amazon, or at all good book stores.

The Curious Incident of the Dog in the Night Time

Novel by Mark Haddon Stageplay adapted by Simon Stephens

PlayReview bySoniaOwen

It’snotoftenyoufindsuchanimaginativeandemotionaltheatreperformance.It’shardtocombineamixofrawemotionwithhumour.That’swhatyougetwiththishighlyacclaimedstageshow.Theplayfocuseson15yearoldChristopherBoone,whohasanAutismSpectrumCondition.Christopher-amathsgeniuswhodespisesbeingtouched-becomesdeterminedtolearnwhomurderedhisneighbour’sdog.Indoingsohebeginsajourneyofdiscoverybeyondtheidentityofthedog’skiller,butofsecretsabouthisownfamily.LukeTreadawayperformanceasChristopherisinspired.HecapturesthefearandconfusionofAutismjustright.Heismeticulousinhischaracterisation;neverlooksanycharacterintheeyeandconstantlyfiddlingwithhisclothing.LuketransportsyouinsideChristopher’sheadbyshowinghismathematicalgenius,andlogicalthinking.Christopherfacesaworldwheremuchofitisalientohim.Luke’sperformanceisnicelycomplimentedbyHollyAird,SeánGleesonandNiamhCusack,whoplayshisteacher. Thesetforthisplayissimple;nofancyscenery,justa 3Dboxthatisagridofsquares,likegraphpaper areferencetoChristopher’smathematicalability. ThisimageryofChristopher’sthoughtprocessesallows youinsidehisheadandseehismathematicalbrain atwork.Thecombinationofgreatsetdesignand amazingdigitaltechnologyallowsyouseamlessly betransportedfromthebusyLondonUnderground toChristopher’sinnerthoughts. Ifyou’resomeonewholiveswithAutism,oryou knowsomeonewhodoes,you’reguaranteedtofindmeaningandunderstandinginLukeTreadaway’sportrayal.Ifyoudon’tknowmuchabouttheconditionthisplaywilldefinitelygiveyouaninsightintothisdifferentworldandthetrialsandtribulationsfacedbypeoplelivinginit.

ThestageplayiscurrentlybeingperformedattheApolloTheatreinLondon.

The Curious Incident of the Dog in the Night Time

Novel by Mark Haddon Stageplay adapted by Simon Stephens

Createaprofile,answermathsproblemsonagriduntilyougetaline,earncutelittlealienstoplaymoremathsgames,itcouldn’tbeeasiertouse.Yetthisaddictivegameofmentalmathsisafunwaytopractiseadd-ing,subtracting,multiplyinganddividing.Thetimeralsocountsup,sonopanicsabouttimerunningout.

Stregnths: Threedifficultysettingsforeachoperation.

Weaknesses: Ifyougetaquestionwrong,itdoesn’tgiveyouasecondattempttoanswerthequestion.

Thisappisbasicallyatodolist,butwithmanymorefeatures.Youcancreatedifferentcolourcodedfilesforeveryaspectofyourbusylife,prioritiseyourimportantjobsandtickofftasksdoneinaneasyway.YoucanevensyncbetweeniPhoneandiPad.

Strengths:Intuitiveuseandpleasantinterface.

Weaknesses:AbitpriceyforanApp.