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Issue 22 / November 2014

essential reading for those who care

Magazine

ON TI IP L E CR LAB BS AI SU AV EE W FR NO

Autism W rld

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Autism W rld Welcome to the FREE PDF version of Autism World Magazine If you are opening this on an iPhone or iPod use the “Open in iBooks” option. For all other PDF Reader, please refer to your specific instruction manual. Or better still try our FREE APP on your device. Pictures labelled “Click on picture to play video” will take you to the video or download the file for playing.

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CONTENTS November 2014

30

30

TO%MY%SON Candy%Goldsmith% Candy’s(letter(to(her(son( Tristan

11%

JEREMY’S%VOICE Jeremy%and%Chantal% SicileAKira%

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AUTISM%PARENTS’% HANDBOOK

49

Dr#John#Wray#and#Heidi# Brandis

49

THE%DENTIST! Danielle%Vescolani A(positive(experience(

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58 Publisher:

© Copyright 2014 MagsWest PO Box 99 Mosman Park WA 6912 info@magswest.com

Autism World Magazine is available digitally for iPad, iPhone, Android devices, PCs and Online. Subscribe free via:

21 RESEARCH

62 UNIVERSITY%DAYS

Professor#Andrew#Whitehouse

Jeremy#Hancock##and#Ashley#Pelton

24 UNIQUE%CONTRIBUTIONS

68 STIMMING

Deb#Flintoff

Nelle#Francis

36 READING%MATTER

72 UNSUNG%HERO

Karen#Holder#and#Helen#Young

Patrice#Maddox

40 LET’S%DANCE

76 SPEED%HUMPS

Donna#Monson

autismworldmagazine.com

Editor: Iain Croft Sub Editor: Heather Paterson Website: autismworldmagazine.com

Facebook: facebook.com/worldautism

Front Cover: Tristan

Alyssa#Aleksanian

44 SENSORY%PROCESSING Jean#Loth

53 GAPS%INTO%YOUR%DIET Jacinta#O’Connor

24 STATEMENT OF POLICY AND DISCLAIMER

58 MY%GAPS%EXPERIENCE% Julie#Gardiner

61 BIRTHDAY%PARTIES Catherine#Crestani#and#Diana#Wolf

72

‘The views expressed in any articles included in this publication are not necessarily those of Autism World Magazine or the publishers MagsWest Pty. Ltd. Autism World Magazine and the publishers do not promote or recommend any specific therapy, treatment, institution or professional viewpoint. Please check with a doctor when changing any diet or major nutritional change.

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Introducing%the%Autism'Parents’'Handbook'

Your%essential%guide%to%services%and%support%in%Perth,%Western%Australia. compiled'by'Heidi'Brandis designed'and'edited'by'Iain'Croft

!If!you!are!in!Australia!order!a!free!copy!by!email! autismparentshandbook@gmail.com or!go!to issuu.com/autismworldmagazine

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This%is%a%little%gem%of%a%handbook! We!yearn!to!be!parents!and!to!raise!happy!and!healthy!children.!When! we!have!a!child!with!ill?health!or!disability,!we!go!through!a!range!of! grieving!reactions.!Sometimes!those!reactions!are!severe!or!prolonged! and!are!cyclical.!We!may!feel!denial,!sadness,!anger!and!loneliness.! Because!children!with!an!ASD!have!difDiculties!with!communication,! socialisation!and!behaviour,!families!often!feel!especially!stigmatised!and! crave!for!more!understanding!from!society. Of!course,!there!will!be!happy!and!joyous!times!and!there!will!be! unending!love!for!our!child.!Families!that!are!active!in!the!community! and!are!knowledgeable!about!resources!are!likely!to!experience!less! frustration!and!isolation. Heidi!Brandis!and!Iain!Croft!are!to!be!congratulated!for!succinctly!setting! out!resources!for!parents!in!Perth,!Western!Australia,!who!have!a!child! with!ASD.!The!compiled!resources!presented!in!this!handbook!will!help! families!to!feel!informed!and!empowered,!and!possibly!surprised!at!the! number!of!resources.! The!Autism'Parents’'Handbook!will!be!a!very!helpful!companion!to! families!in!the!early!days!around!the!diagnostic!time,!as!well!as!being!a! valuable!resource!at!other!periods!in!the!journey.

Dr%John%Wray Developmental!Paediatrician Perth,!Western!Australia

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Publication(of(the( Autism'Parents’' Handbook(was( proudly(supported( by(a(Support(Group( Development(Grant( from(Developmental( Disability(WA,(and( by(PeopleSense(Pty( Ltd,(Autism(West( and(Autism(World( Magazine.

The!months!before!and!after!your!child!is! diagnosed!can!be!so!stressful!and!very! overwhelming,!in!both!a!practical!and! emotional!way.! It!took!me!many!years!to!get!help!and! support!before!and!after!our!daughter!was! diagnosed.!Everyone!I!called!seemed!to! refer!me!to!another!agency!and!I!went! round!and!round!in!circles,!not!really! knowing!or!understanding!exactly!what! services!we!needed!or!how!to!access!them.! I!spent!countless!hours!searching!for!help! while!trying!to!manage!ongoing!day!to!day! autism!challenges,!running!my!own! business!and!developing!anxiety!and! depression!along!the!way.!It’s!only!now!?! years!later!?!that!I!can!look!back!and! clearly!see!the!huge!impact!this!had!on! our!family’s!relationships,!mental!and! physical!health,!friendships!and!social!life,! and!my!career.

I!could!have!been!more!present!and! available!to!my!children!and!husband.! That’s!what!inspired!me!to!gather! resources!along!our!journey,!thinking!that! one!day!I!would!put!them!all!together!to! create!a!“survival!guide”!for!other!parents.! The!handbook!was!an!amateur!production! until!I!had!the!good!fortune!to!meet!Iain! Croft,!editor!extraordinaire,!of!Autism! World!Magazine.!I!am!grateful!that!he! shared!his!considerable!editorial!expertise! and!for!many!hours!that!he!voluntarily! devoted!to!the!handbook.!Iain’s!generosity! to!the!autism!community!is!unparalleled. We!hope!the!Parents’'Handbook!saves!you! from!going!through!the!same!exhausting! process!that!we!did!?!and!that!somewhere! in!the!pages!you!will!Dind!all!the!help!and! support,!people,!funding!and!services!that! your!family!needs!to!endure!this!time.!!I! wish!that!in!some!way!our!little!handbook! gives!you!more!of!both!to!continue!your! journey!and!be!hopeful!about!your!son’s! or!daughter’s!future.

If!I!had!had!a!handbook!like!this!one,!it! could!have!saved!me!so!much!time,! energy,!enormous!stress,!confusion!and! insomnia.! Heidi%Brandis Northern!Suburbs!Autism!Mums!Group Perth,!Western!Australia!

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Heidi’s daughter Mia Autism World Magazine - 9

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http://www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio http:// www.amazon.com/Mind-Body-Techniques-Aspergers-Syndrome/dp/ 1843108755/ref=sr_1_1? ie=UTF8&qid=1397849433&sr=8-1&keywords=ron+rubio

http://www.woollymammothboy.com

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http://www.pathfindermentoring.com Autism World Magazine - 10

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Finding Jeremy’s voice JEREMY AND CHANTAL SICILE-KIRA Jeremy& Sicile+Kira& & is # an# ar'st,# writer# and# advocate,# and#enjoys#traveling.# He# is #co6author# of# #A" Full"Life" with"Au-sm:" From"Learning"to"Forming"Rela-onships" to"Achieving"Independence# (Macmillan).# In#2010,#Jeremy#gave#a#commencement# speech# at# his# high# school# gradua'on# using#voice#output#technology.#Jeremy’s# advocacy# work# includes# serving# as# Au'sm# Research# Ins'tute’s# Youth# Representa've# to# the# United# Na'ons# and# as# a#Young# Leader# for# the# Au's'c# Global# Ini'a've.# In# 2007# he# was# highlighted# on# MTV’s# True" Life# in## ‘I#Have#Au'sm.’#Jeremy#recently#moved# into#an#apartment#with#supports.## He#is# turning# his#pain'ng# into#a#career.#Cards# may# be# ordered# through# his# website.## Prints #and# one6of6a6kind# pain'ngs# may# b e# o r d e r e d# b y# c o n t a c ' n g# Chantal@au4smcollege.com.# For&more&informa4on,&go&to& www.jeremysvision.com&& Chantal& Sicile+Kira& is#an# award6winning# author,# speaker# and# the# founder# of# Au'sm# College# an# online# resource# to# educate#people#about#au'sm.# Chantal#was#recently#named#one#of# the# world’s # Top# 10# Au'sm# Bloggers# and# Social#HealthMaker#by#Sharecare.## Chantal# Sicile6Kira# is# guest# speaker# at# T h e# A u ' s m :# T h e# W h o l e# C h i l d# Conference# 2014,# presented# by# Au'sm# West.

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JEREMY SICILE-KIRA I!like!to!think!like!a!good! man!once!told!me:!you!are! the!product!of!your! parents!and!a!product!of! your!environment,!and!the! reaction!you!have!to!both.! If!you!are!a!hard!worker! and!have!great!parents! and!a!good!school,!you!will! be!successful.!If!it!was!not! for!my!nice!mom!and!great! teachers,!my!life!would!not! have!been!worth!living.! They!believed!in!me!and! that!has!made!the!biggest! impact,!more!than!the!type! of!teaching!methods!used.! My!education!has!been! varied!between!home! schooling,!classrooms!for! the!severely!handicapped,! and!general!education! classes.! My!mom!took!me!out!of! classrooms!when!there! was!neglect!or!abuse. Just!think!what!it!would!be! like!not!being!able!to!move! your!body!like!you!want.! My!body!could!not!move! on!its!own.! When!I!thought!about! moving!a!part!of!my!body,! nothing!would!happen.!

People!thought!I!was! retarded!because!I!could! not!move!my!muscles!to! talk.!Not!being!able!to!talk! does!not!mean!you!are! retarded.!It!means!you! need!to!Dind!a!way!to! communicate.!Severely! autistic?! It!means!being!stuck!in!a! body!that!doesn’t!work! well,!with!no!way!to! communicate.!

The!best!day!of!my!life!was! when!my!mom!gave!me! the!reason!for!living.!It! was!early!in!my!life!and!I! was!not!moving!very! much.!Mom!got!me!a!great! physical!therapist.!He! showed!my!mom!how!to! move!my!body!parts!so! that!I!could!learn!to!move! them!and!control!my!body.!

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It!was!in!the!living!room! on!the!rug!that!I!took!my! Dirst!step.! Clearly!I!was!thrilled.! Looking!at!the!rug!for! months,!I!was!now!able!to! follow!the!beautiful! pattern.!It!gave!me!the! feeling!of!being!in!a! beautiful!world!of!Dlowers! and!vines.!It!came!as!a! surprise!to!me!that! nobody!noticed!the!great! beauty!of!it.!!Others! walked!by,!but!I!had!to! stay!on!the!beautiful! paradise. I!was!a!happy!baby!even! though!I!could!not!move.!I! heard!noises!but!did!not! understand!that!noise!had! meaning.!One!day!I!heard! a!nice!noise!coming!out!of! my!mom’s!mouth.!I!was!in! my!crib.!My!mom!began!to! sing!and!I!saw!my!mom’s! lips!move.! I!thought!there!must!be!a! connection!between!her! lips!moving!and!the!sound.! I!just!knew!I!had!to!focus! on!my!mom’s!voice.!Then! it!was!easy!to!understand! her!voice.!I!understood!

only!my!mom’s!voice,!but! bit!by!bit!I!noticed!others.! Little!by!little!my!nice! mom!gave!me!the!tools!to! recognise!that!everything! had!meaning.!! Mom!read!to!me!often!and! made!me!understand!the! connection!between! words,!images!and!sound.! My!favorite!part!of!the!day! was!when!mom!would! read!to!me.! We!moved!to!the!UK.! The!mistake!my!mom! made!was!to!think!that!a! special!school!was!a!safe! place!for!me.!I!was!not! always!happy!there.! I!saw!a!girl!scream!and!fall! backwards!every!day!at! snack!time!because!they! were!trying!to!make!her! eat!cookies;!that!was!scary! to!watch.! Mom!used!to!volunteer! and!one!day!she!was!there! at!snack!time!and!she!was! very!upset!and!told!the! principal!that!it!was!not! nice.!Mom!did!not!let!me! go!back.

She!got!tutors!for!me.!I! knew!then!that!I!would!be! able!to!come!out!of!my! great!solitude!because!the! tutors!tried,!with!mom,!to! reach!me!across!the! darkness.!Just!the!fact!that! the!tutors!tried!gave!me! the!conDidence!to!try!and! pull!myself!out!of!my! nothingness. I!remember!that!mom! gave!me!a!really!beautiful! program!where!I!had!to!sit! really!still!every!day!for!a! few!weeks!to!listen!to! music!through! headphones;!it!opened!up! a!world!of!different! sounds!to!me.!I!could!not! begin!to!understand!the! different!noises!until!I!had! that!program!with!the! headphones.!I!could!hear! more!sounds!and!the! voices!because!just!until! then!I!could!not!make!out! the!differences!in!the,! frankly,!noisy!background.! I!get!so!happy!when!I! remember!now!the!few! weeks!that!changed!my! life!because!I!could!hear! other!things!besides!my! mom’s!voice.!

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JEREMY Music!then!became!a! pleasure!for!me!to!listen! to. I!could!see!the!lines!on!a! very!tiny!spot!of!a!book! cover!that!my!mom! seemed!not!to!notice.!I! could!not!see!the!letters! until!mom!got!the!idea! from!our!friend,!Cathy! Tissot,!to!make! transparencies!for!me.! I!then!lined!up!the!letters! and!I!had!to!learn!to!look! at!the!whole!letter!instead! of!the!lines!of!black!ink! that!made!up!the!letter.!! Because!looking!at!letters! was!then!very!easy,!I!could! learn!to!read.!Pages!were! like!my!own!best!friend! because!I!could!see! familiar!patterns.!I!liked! patterns!and!the!letters! formed!patterns!that!had! meaning.!My!mom!read!to! me!and!showed!me!the! words,!greatly!helping!me! give!meaning!to!the! patterns. Still!now,!my!visual! processing!makes!it!really! hard!for!me!to!read!and! see.!

I!get!tired!when!I!have!to! focus.!Vision!therapy! seems!to!help!with!seeing! the!whole!picture.!When!I! look!at!letters!I!see!the! relation!to!each!other.!I! think!vision!therapy!helps! me!to!get!my!eyes!and! hands!working!together . I%Find%My%Voice! Some!good!people!have! been!important!to!my! success!in!communicating.! An!Indian!woman,!Soma,! was!the!most!important! person!to!make!people! understand!that!I!was!able! to!learn.!Soma!taught!me! with!RPM,!the!Rapid! Prompting!that!leads!to! communication!through! typing.!The!day!I!realised!I! was!not!retarded!was!the! day!that!Soma!taught!me! some!math.! My!mother!asked!the!high! school!to!try!to!teach!me! like!Soma!did.!Maureen! and!Allan!were!great! teachers.!Some!other! helpful!people!have!been! my!‘Afternoon!Angels’!and! my!‘Team!Jeremy.!

’The!really!important!thing! is!that!everything!Mom!did! helped!and!was!built!on! something!else.! When!I!attended!Torrey! Pines!High!School,!I!was! placed!in!the!Severely! Handicapped!Special! Education!class.!This!is! where!I!met!my!favorite! teacher,!Mr!Alan! Gustafson,!who,!after!some! time!with!me,!was! convinced!I!was!‘in!there! somewhere’!as!he!told!me.! He!was!determined!to!Dind! a!way!for!me!to! communicate!with!him,! and!he!eventually!did!after! learning!how!I!used!RPM! to!learn!at!home!with!my! mom. Therapies!played!a!big!role! throughout!high!school! too.!Occupational!Therapy,! Vision!Therapy,! Neuromusic!Therapy!and! even!Speech!Therapy! helped!me!better!many! aspects!of!my!life!in!order! to!do!better!in!school.! Learning!to!self?regulate! helped!me!stay!in!class! longer,!even!though!I! would!still!need!breaks! sometimes. Autism World Magazine - 14

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High School Graduation Day

What%I%Needed%to%Learn% in%High%School%For%the% Next%Step%Up%the%Ladder% of%Life. The!important!things!I! learned!!!!!is!to!understand! my!need!for!breaks!and! accommodations,!and!how! to!ask!for!them.! Speaking!up!for!myself! was!hard!to!learn,!but!!is! necessary!for!survival!as! an!adult.!

Also,!learning!to!control! my!body!and!moments!of! feeling!overwhelmed!is! difDicult;!I!worked!on!that! a!lot.!I!got!mad!at!my!mom! sometimes!because!she! made!me!follow!through! with!what!I!told!her!I! wanted!to!do.

!I!have!realised!that!I!have! to!work!hard!to!make!my! dreams!come!true. Learning!is,!and!will! always!be,!an!important! part!of!my!day.! Frankly,!having!the!ability! to!learn!is!a!gift!and!is! truly!rewarding. Autism World Magazine - 15

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CHANTAL SICILE-KIRA Jeremy!was!born!in!Paris,! France,!in!1989,!when!the! autism!incidence!rate!was! estimated!to!be!one!in! 1,000!according!to!US! Digures!(current!rates!are! estimated!at!1!in!88).! In!France,!at!that!time,! autism!was!considered!a! mental!illness!and!often! the!word!‘autism’!was!not! used.! Instead!there!was! discussion!of!‘troubles'de' comportements’,!i.e.! ‘problems!with!behavior’.! When!Jeremy!was!a!baby,! I!knew!there!was! something!wrong!with! him,!that!he!was!not! developing!properly.! Having!worked!with! young!adults!with!autism! in!the!US!prior!to!my! move!to!France,!I! recognised!autistic! tendencies.! He!looked!at!us!and!made! some!cooing!sounds!but! he!wasn’t!very!active.!

He!didn’t!play!with!toys! appropriately;!he!just! looked!at!them!in!his! hand!and!moved!them!a! little.!I!could!place!him!in! a!sitting!position!and!he! wouldn’t!move!or!attempt! to!get!a!toy!further!out!of! his!reach.!

How%I%Got%the%Doctor’s% Attention I!shared!my!fears!that! something!was!wrong! with!family!and!friends,! but!they!inevitably! replied,!“So!he!takes!after! his!dad!!Not!everyone!has! to!be!as!energetic!as!you.! He’s!a!calm!baby.!Just!be! happy.” Autism World Magazine - 16

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The!paediatrician!was! not!very!supportive!of! my!concerns,!so!I!invited! him!to!my!son’s!Dirst! birthday!party.! Seeing!the!contrast! between!my!son!and!a! room!full!of!healthy! babies,!he!was!forced!to! face!the!fact!that!some! tests!might!be!in!order.! The!paediatrician!sent! us!to!a!very!reputable! hospital!for!tests.! However,!no! conclusions!were! reached;!no!answers! were!given!to!us.!They! actually!lost!the!test! results!and!never! followed!up,!despite! letters!and!phone!calls! from!my!end. Physical%Therapy On!the!suggestion!of! another!parent!I!took! Jeremy!to!another! hospital!that!specialised! in!muscles.!They! referred!us!to!a! wonderful!physical! therapist,!who!we!saw! twice!a!week.!

The!PT!showed!me! which!exercises!needed! to!be!repeated!over!and! over!to!help!Jeremy’s! muscles!get!stronger.! Eventually,!Jeremy! learned!to!walk.!The! only!problem!is,!when! Jeremy!took!his!Dirst! steps,!he!didn’t!walk! towards!me!or!his!dad.! He!followed!the!pattern! in!the!rug.! Find%an%Institution I!continued!to!search!for! answers.!The!day!my! son’s!diagnosis!was! conDirmed,!when!he!was! about!three,!is!indelibly! etched!on!my!mind.!!We! went!to!see!the! diagnostician!and!she! said,!“If!you!are!lucky,! you!will!Dind!a!good! institution!for!your!son.! You’d!better!start! looking!now.”!! Little!did!she!know!I!had! worked!for!two!years!in! Californian!state! hospitals!helping!young! adults!leave!institutions.!! There!was!little!chance! of!me!putting!my!son!in! one.!!

Applied%Behavior% Analysis I!read!Let'Me'Hear'Your' Voice!by!Catherine! Maurice,!and!I!also!met! Cathy!Tissot!(now!a! Professor!at!the! University!of!Reading),! whose!autistic!son! attended!the!same! school!as!mine.!Neither! of!our!children!were! progressing!at!school,! and!after!the!‘snacktime’! incident,!we!decided!to! pool!our!resources!and! try!the!Lovaas!program,! a!home?based!applied! behavior!analysis!(ABA)! program.! I!remember!going!to!her! house!one!evening,! trying!to!get!the!nerve! up!to!call!the!Life! Institute,!the!Lovaas! center!in!California,!to! Dind!out!if!there!was!a! consultant!who!could! come!and!put!on!a! workshop!to!train!us! and!students!to!work! with!our!children.! Making!that!phone!call! changed!my!life.! Autism World Magazine - 17

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Chantal That!was!the!moment! when!I!stopped!being!a! victim!of!the!systems!in! place,!took!control,!and! realised!I!was!not! powerless!to!help!my!son. Jeremy!eventually!stopped! going!to!college.!He!loves! learning!but!was!getting! PTSD!attacks.!At!about! that!time!he!was!invited!to! volunteer!at!the!Autism! Research!Institute!(ARI),! as!a!Youth!Leader!for!the! Autistic!Global!Initiative,! and!as!an!ARI!Youth! Representative!to!the! United!Nations.!! Synesthesia Three!years!ago!we! discovered!that!Jeremy! had!synesthesia,!a! neurological!condition!in! which!stimulation!of!one! sensory!or!cognitive! pathway!leads!to! automatic,!involuntary! experiences!in!a!second! sensory!or!cognitive! pathways.! Jeremy!was!Dlipping! through!the!book!Born'on' a'Blue'Day!by!Daniel! Tammet!(who!has!

synesthesia),!and!I! remarked!that!our!friends,! Debra!and!her!son,!Blaze,! also!see!letters!and!words! in!colour!as!Daniel!does.! Jeremy!replied!by!spelling! out!on!his!letterboard,! "Doesn't!everyone?"!Upon! further!questioning! Jeremy!typed!"I!also!see! and!feel!people’s!emotions! as!colour." I!did!not!know!about!the! beautiful,!colorful!portraits! of!people!that!Jeremy! paints!in!his!dreams.! In!the!Ted!Talk,!‘I!Listen!to! Colour’,!Neil!Harbisson! describes!how!he! translates!sound!into! colorful!portraits.!In!much! the!same!way,!Jeremy! translates!the!emotions!of! people!into!portraits,!only! he!does!it!in!his!sleep. Jeremy!began!to!tell! support!staff!and!me!of!his! dreams!in!which!he! painted!the!portraits!of! people!he!knew.!! After!a!few!days!of! dictating!his!nightly! dreams,!he!spelled!out:! "Justly!I!frankly!had!a! dream,!I!had!an!art!show.!

“I!had!10!paintings!at!the! gallery.!Mom,!you!are!nice! to!tell!me!how!to!get!an!art! show."! I!replied:!"First,!show!me! the!paintings." So!he!started!to!paint!with! the!help!of!a!support! person.! Since!then,!he!has!painted! many!of!his!dreams.! Now!he!is!painting!to!help! pay!for!his!rent;!clients! meet!Jeremy!and!his! support!person!on!Skype! for!half!an!hour!and!he! ‘reads’!their!colours.!! Jeremy!then!writes!the! “dream”!he!has!of!their! personalised!portrait.! Then!he!paints!it.! For!examples!of!his!work,! go!to!JeremysVision.com! When!you!click!on!the!link! in!the!photograph,!you!can! read!the!dream!that! inspired!the!painting.!

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becoming!more! independent!and!reaching! his!goals. The!lesson!of!our!story!is! this:!the!window!of! opportunity!for!learning! never!closes.! Follow!your!instincts!and! never!give!up!on!what!you! feel!is!right!for!your!child.! Focus!on!their!strengths.!

Conclusion As!a!child,!Jeremy!had! many!challenges,!and!he! continues!to!have!some.! We!have!tried!different! biomedical,!dietary,!and! homeopathic!treatments;! different!educational! strategies;!sensory! therapies;!occupational,! physical,!and!speech! therapy!–!anything!that! made!sense!to!help!Jeremy! based!on!his!needs!and! symptoms.!

Some!have!been!very! helpful,!others!have!not.! As!he!learned!to! communicate!and!type,!he! was!able!to!tell!us!what! the!therapies!felt!like!for! him!and!what!he!felt!was! useful.!

And!most!importantly,! never!forget!that!although! they!may!not!be!showing' you!they!understand,!they! may!understand,!and! everything!you!do!(i.e.! reading!to!them!every! night,!singing!to!them)!is! helping!them!make!! connections.! Choose!the!goal!of!having! your!child!become!the!best! he!or!she!can!be;'not!the! goal!of!being! indistinguishable!from! their!peers.!

Now!that!he!is!a!young! man,!he!decides!what!he! would!like!to!try!or! continue!to!help!him!in! Autism World Magazine - 19

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research

Alexis Rene Phone 9489 7927 The

AusTRAliAn AuTism Autism World Magazine - 20

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Autism Research

ANDREW WHITEHOUSE BSc, PhD

Dr Andrew Whitehouse is Head of the Autism Research Team at the Telethon Kids Institute in Western Australia

My!Dirst!introduction!to! autism!was!through!a! friend!of!my!mum.!Her!son! had!recently!been! diagnosed!with!autism!and! mum!encouraged!me!to!go! and!help!provide!some! therapy!to!the!child.! I!did!and!it!changed!my! life.!I!saw!the!family’s! realisation!that!their!child! was!developing!differently! to!other!kids;!I!saw!the! difDiculty!they!had!in! obtaining!a!diagnosis;!I! saw!their!endless!Dight!to! receive!the!proper! services;!and!I!saw!the! enduring!love!they!had!for! their!child.!

I!just!felt!that!dedicating! my!working!life!to!helping! these!wonderful,!inspiring! families!would!be!a!life! well!spent. ! I!started!my!working!life! as!a!speech!pathologist,! fully!intending!to!pursue!a! career!as!a!clinician.!! The!only!thing!standing!in! my!way!was!a!crippling! lack!of!talent!in!this!area. ! My!Dirst!clinical!job!was! helping!children!with! autism!to!improve!their! communication!and!social! skills.!!

It!was!enormously! fulDilling!work.!!However,! I’m!quite!sure!I!got!more! out!of!the!work!than!the! families!did,!which!is! certainly!not!the!right!way! around.!! My!‘Aha!’!moment! suggesting!a!change!in! career!emphasis!came! when!a!young!boy,!all!of! seven!or!eight!years!of!age,! didn’t!take!too!kindly!to! my!clumsy!attempts!at! therapy.!!He!grabbed!my! glasses!and!snapped!them! in!half.!!The!rest!of!the! session!was!done!entirely! by!feel. !

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But!I!had!enormous! empathy!for!the!families!I! was!seeing!and!I!still! desperately!wanted!to! help.!!Life!after!a!diagnosis! of!autism!can!be!extremely! tough.!!The!emotional,! physical!and!Dinancial!toll! is!difDicult!to!fathom! unless!you’ve!been! through!it.!!I!was!working! with!extraordinary! children,!from! extraordinary!families,!in! extraordinary! circumstances.!!I!wanted! to!help!and!that’s!where! research!came!in. !

Autism!is!an!area!that!is! too!often!shrouded!in! mystery.! Hearsay,!rumour!and! speculation!are!routinely! spoken!about!and!posted! on!the!internet!as!the! truth;!this!makes!choices! extremely!difDicult!for! families!who!need!factual! guidance!more!than! anything.!Science!is! needed!to!cut!through!all! the!murkiness!that!seems! to!envelops!autism.!!I!came! to!realise!that!research! truly!can!change!the! world,!and!I!wanted!to!be! part!of!it. !

We!engage!in!science!to! make!clear?eyed,!un? confused!knowledge! claims!which!beneDit!the! autism!community.!! We!engage!in!science!to!be! able!to!recommend!the! best!evidence?based! therapies,!interventions! and!other!treatments!for! children!living!with!this! disorder. ! If!we!get!to!the!bottom!of! what!may!lead!to!autism,! and!if!we!devise!the!best! therapies,!we!will!without! doubt!improve!the!lives!of! people!with!autism! beyond!our!current! expectations.!!

The autism team at Telethon Kids

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Puberty Blues with Deb Flintoff

Deb Flintoff is a passionate advocate for children on the autistic spectrum and their families. Deb’s extensive personal experience, with son Josh, and knowledge of systemic procedures and policies, has allowed her to positively engage and empower other families to navigate through their daily lives and plan for the future. Autism World Magazine - 24

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UNIQUE CONTRIBUTIONS by Deb Flintoff

!!!!!!!Raising'children'with'autism,'"needs'to'be'less'about' focussing'on'weaknesses,'and'more'about'fostering' their'unique'contributions" 9!Temple!Grandin.

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Josh!(in!his!own!words),!is!our!“nice,!cool,! trendy,!handsome!teenage!son!for!ever!and! ever.”!To!us,!he!is!our!wonderfully!funny! caring!son!with!his!own!unique!and!individual! view!of!the!world. At!three!and!a!half!years!of!age,!Josh!was! diagnosed!with!Autism.!Our!life!commenced! on!a!journey!of!therapy,!specialist! appointments,!waiting!lists!and!transition!into! an!appropriate!early!learning!environment.! Now,!14!years!later,!we!are!in!the!process!of! planning!for!Josh's!all!important!transition! from!high!school!to!‘life!school’!?!a!process! which!requires!a!very!different!level!of! planning!and!preparation. At!17,!it!is!Josh's!speciDic!interests!and! passions!which!have!driven!the!planning! process!and!taken!centre!stage!as!we! endeavoured!to!source!opportunities!catered! to!his!speciDic!talents!and!needs.!For!Josh!to! lead!a!meaningful!existence!and!blossom!in!a! world!where!his!talents!were!truly! appreciated!and!valued,!we!knew!it!was! imperative!to!source!or!create!activities!which! would!engage!him!on!a!personal!level.!To! work!with!his!interests,!not!what!we,!as!his! parents,!think!he!might!be!interested!in.!And! plan.!Carefully!plan.

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So,!how!does!one!come!up!with!a! meaningful,!truly!person?centred! activity!out!of!such!a!narrow!interest! base?!My!initial,!instinctive,!if!not! slightly!light!hearted!response!is!"in! the!shower".! Most!of!my!brainwave!or!light!bulb! moments!occur!at!the!most! inopportune!times,!like!when!I’m!in! the!shower!or!lying!in!bed!awake!at! three!in!the!morning.!If!only!my! energy!levels!met!with!my,!at!times,! overly!exuberant!and!unbridled! enthusiasm.!Yet,!it!is!that!wide?eyed! enthusiasm,!which!drives!my!energy! and!passion!to!make!a!difference!and! provide!Josh!with!the!happy,! balanced,!digniDied!and!valued!life!he! deserves.!Ironically,!it!is!these!ideas,! which!usually!prove!the!most!fruitful! and!have!inspired!my!husband,!Pete,! and!myself!in!our!planning!for!Josh's! future!beyond!high!school. "From'a'tiny'seed,'a'vision'grows".' When!Josh!read!this!he!said,!"there! are!lots!of!different!seeds!and!lots!of! different!plants".!

Josh!is!currently!in!year!12!at!a! wonderful!Education!Support!Centre,! where!community?based!activities! are!a!vital!component!of!the!school! curriculum!and!incorporated!into!the! student’s!individual!education!plans! at!every!opportunity.! One!such!activity!Josh!has!been! learning!about,!and!actively! participating!in,!for!the!past!few!years! is!‘Reduce,!Reuse,!Recycle’.! In!order!to!build!on!Josh's!school! experience!and!extend!his!knowledge,! we!started!separating!our!paper!and! cardboard!packaging!from!the! general!waste!at!home.! We!continued!to!take!it!to!the! recycling!plant!with!Josh!on!a!weekly! basis. !An!extremely!important!adjunct!was! then!evolving!this!activity!into!a!more! community?based!initiative!where! Josh's!recycling!would!beneDit!the! local!community!in!a!positive!and! valued!way.!

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I!approached!our!favourite!local!cafe,! ‘Milk!and!Paper’,!to!see!if!they!would! like!Josh!to!collect!their!unsold!papers! each!week!for!recycling!and!they! happily!obliged.!This!has!provided! Josh!with!a!responsible!and!valued! role!at!school!and!at!home,!as!well!as! in!the!community.!It!has!allowed!him! to!feel!a!sense!of!ownership!and!pride! in!his!"good!job",!as!he!would!say. Add!to!this!one!of!Josh's!favourite! Disney!Pixar!movie,!WallGe,!about!a! recycling!robot!that!cleans!up!a! desolate!Earth!by!recycling!all!the! waste!one!cube!at!a!time.!Wall?e! opens!the!door!to!his!belly,!piles!in! the!waste,!closes!the!door,!presses! down!on!his!head!and!out!pops!a! waste!briquette!in!the!shape!of!a! cube.! Then!came!my!brainwave,!waste! briquettes,!or!as!I!soon!discovered!on! the!internet,!paper!briquettes.What! better!way!to!recycle!our!used!paper,! rather!than!just!disposing!of!it!at!the! tip.!

I!researched!my!idea,!spoke!to!people! and!made!some!invaluable!contacts! who!saw!my!vision!and!have!since! helped!me!bring!my!little!dream!for! Josh!to!life.! It!didn't!end!there,!the!more!I! brainstormed,!the!greater!the! possibilities!grew!as!I!envisioned!this! evolving!into!a!meaningful,! constructive,!charitable!and! enterprising!activity!for!groups!of! both!school!students!and!adults!with! disabilities!in!the!wider!community.! That!is!the!big!plan,!but!let's!just!start! with!Josh. The!wonderful!men!at!the!‘Stirling! Men's!Shed’!made!me!a!prototype! briquette!press!to!use!with!Josh!at! home.!I!prepared!a!written!and!visual! manual!and!video!tutorial.! I!constructed!a!simple!visual!for!Josh! which!paralleled!Wall?e's!waste!cubes! to!his!round!paper!briquettes.! The!seed!was!set.!

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I!made!some!briquettes!to!cement!the! idea!and!Josh!took!his!Dirst!important! step!in!this!part!of!the!process;!he! renamed!the!briquettes!by!calling! them!"Garbage!Donuts"!and!"Rubbish! Donuts"!due!to!their!shape!?!round! with!a!hole!in!the!centre! This!process!has!evolved!over!time! with!a!combination!of!patience,! passion,!perseverance!and!careful! planning!?!planning!which!will!be! incorporated!in!to!Josh's!transition!as! we!endeavour!to!nurture!his!interests! and!talents!for!many!years!to!come.

Autism World Magazine will support and follow Josh and Deb over the next few months so we can try and create a blueprint for others to follow this simple solution. As they say watch this space.

And if you are creating a space or business for adults on the spectrum then we’s love to hear from you. Email: contact@magswest.com Web: www.autismworldmagazine.com/contact-us.html Facebook: www.facebook.com/worldautism

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TO&MY&SON CANDY GOLDSMITH

People constantly tell me 'I don't know how you do it', in regards to parenting a child with special needs. My son Tristan is now in full regression; we have never experienced him like this before and I am left looking for answers. So I wrote to him.

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“Some!days!the!world!is!to!big! and!too!complicated!and!it's!easy! to!get!lost.

“I#think#sometimes#we#all#get#a#bit#lost,# even#me#and#even#Dadda. “Sometimes#the#world#is#confusing#and# scary,#and#sometimes#even#the# strongest#people#or#monsters#get# scared.# “Even#Godzilla. “And#right#now,#everything,#the#whole# world#might#seem#like#a#big#scary#place,# and#right#now,#you#might#feel#alone#and# lost.

“But#right#now#I#want#to#tell#you#that# you#are#strong,#and#inspiring,#and#I# promise#you#that#one#day#soon# everything#will#feel#better;#the#world# will#be#better#for#you. “I#want#to#tell#you#that#from#the#day#you# were#born#you#have#made#me#a#better# person;#you#have#made#me#look#for#light# even#in#the#darkest#places,#and#I#have# found#it#in#you. “In#your#smile,#in#your#laugh,#when#your# eyes#sparkle#when#you#talk#to#me#about# things#that#you#love. Autism World Magazine - 31

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‘I#know#someday#soon#we#will#see#you#smile#again,#hear#you#laugh,#look#into#your# eyes#to#share#some#special#moment#that#you#might#want#to#share#with#us. “When#you#ache#I#do,#and#right#now#all#I#want#is#for#everything#to#be#better,#but#you# have#taught#me#patience#and#I#know#that#eventually#things#will#be#okay.# “We#will#be#okay. “I#love#you.#I#love#you#so#much#that#it#hurts#and#I#promise#to#share#this#journey#with# you.# “I#promise#to#walk#with#you,#carry#you#when#you#need#to#be#carried#and#I#am# waiting#to#laugh#with#you#again,#some#day#soon.”

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!“I!love!you!bigger!than!a! dinosaur,!bigger!than!a! megalodon!and!even! bigger!than!the!king!of! all!monsters,!Godzilla.''

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Kalparrin%operates%a%variety%of%services%and%programs%to% provide%assistance%to%parents%and%children%in%need. Visitor#Lounge Where#families#of#children#with#disabilities#or#special#needs# can#talk#to#a#Family#Support#OfKicer,#browse#our#extensive# collection#of#pamphlets#and#resources,#meet#with#other# parents#or#just#relax#with#a#cup#of#tea#or#coffee. Information#and#Support Search#our#website#for#links#to#helpful#resources#or#talk#to#our# Family#Support#OfKicers#at#Kalparrin. Mothers#Weekends Held#twice#a#year#in#the#Metropolitan#area#and#twice#in# Regional#WA. Family#Events Kalparrin#holds#its#annual#inclusive#Family#Fun#Day#for# children#with#special#needs#and#their#families. Events#for#couples#and#other#family#members#are#organised#as# funds#permit. Parent#Link Helping#families#link#and#network#with#other#families#in# similar#situations.#Please#talk#to#our#Family#Support#OfKicer#for# more#information. Newsletter Kalparrin#Cares#is#published#4#times#a#year#and#contains#news,# member#stories#and#highlights#from#our#events#and#programs. ETNews Kalparrin#ETNews#is#a#weekly#electronic#bulletin#covering# events#and#information#of#interest#for#our#members#from#the# Disability#sector. Telephone:#08#9340#8094 FreeCall:#1800#066#413 Fax:#08#9380#6114 Email:#kalparrinwa@health.wa.gov.au Location Level#4,#Hay#Street#Building#(near#Hydrotherapy#Pool) Princess#Margaret#Hospital,#Subiaco,#Western#Australia#6008

Opening#Hours:#8:30am#–#4:30pm,#Monday#–#Friday Autism World Magazine - 34

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READING MATTER Karen Holder and Helen Young, Librarians - Activ Library

Looking'for'something'in' particular?''Can’t'7ind'it?'

Facilities'include

Then#come#visit#us#at#the##Activ# Library,#in#Wembley,#which#has# the#most#comprehensive# information#about#Autism,#in#the# state,#with#an#extensive#range#of# books,#DVDs#and#online#resources.

Partly#funded#by#the#Disability# Services#Commission#Activ#has#a# vast#collection#of#books,#journals,# training#materials,#selected# websites#and#audiovisual# materials.

• •

Trained#staff#to#assist; Computer#and#internet#access,# including#free#WiFi#and#access# to#Ebsco#scientiOic#databases; Photocopying,#printing#and# laminating#facilities; Software#to#aid#communication,# including#Boardmaker; Comfortable#seating#and# informal#meeting#areas;# Coffee#making#facilities; Audio#visual#resource#viewing# area;#and Formal#meeting#rooms.

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Meeting'your'needs The#collection#includes#an# extensive#range#of#resources#and# information#on#autism#spectrum# disorders,#and#can#assist#with# information#on#early#intervention,# behaviour#management,# communication,#coping#strategies,# education,#emotions,#nutrition# and#diet,#social#skills,#sex# education#and#sexuality,# therapies,#and#more. Everyone#is#welcome#to#access#the# Activ#library#–#parents,#families,# carers,#people#with#a#disability,# teachers#and#staff#working#in#the# disability#Oield.#

Contact#us#to#discuss#your# borrowing#options. Spacious#and#light,#with#great# facilities,#the#Library#is#an#ideal# place#to#hold#parent#getQtogethers,# meetings#and#events.# Find'us'on'the'Internet Access#the#Activ#Library#catalogue# to#for#search#for#books,#dvds,# websites#and#youtube#videos#at# www.activ.asn.au/library#or# contact#library#staff#to#assist#you# in#Oinding#the#most#appropriate# information.

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Parent'Portal Activ#Library’s#online#Parent# Portal,#parentportal.activ.asn.au,# provides#a#starting#point#for# parents#and#carers#to#gain#access# to#quality#information#on#Autism# Spectrum#Disorders. Current'Awareness Activ#Library#can#keep#you#up#to# date#with#the#latest#resources,# local#activities,#courses#and# conferences#via#our#monthly# emailed,#Current#Awareness#List.## Please#contact#us#to#be#added#to# this#distribution#list.

Library'Opening'Hours Monday#to#Friday#### 9.00amQ4.30pm Contact'details Karen#Holder#and#Helen#Young# Librarians# Activ#Library Tel:#(08)#9387#0458 327#Cambridge#Street,#Wembley# WA#6014# \

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Need$someone$to$talk$to?

24-Hour Autism Hotline

1300 222 777 (Australia*Only)

The Autism Advisory and Support Service (AASS) runs a 24-Hour Autism Hotline which is staffed by parent volunteers who have children with Autism. You can call any time of the day or night, from anywhere in Australia, to chat to someone who can offer service and guidance from a parent's perspective. Whenever you call AASS you are speaking a parent of a child with Autism so you know that you are talking to someone who understands what you are experiencing. Parents and carers waiting for a formal assessment and diagnosis, looking for the right intervention and joining the long waiting lists can be extremely overwhelmed, confused and frustrated. AASS will help with unbiased advice, encouragement, guidance and support. If you get the answer-phone please leave your number and a message. We will call you back. Autism World Magazine - 39

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let’s dance

Donna%Monson,%from%Perth,%has%been%dancing%since% the% age% of%two.% When% she% had% a%baby% girl,%she% was% hopeful%that%her%daughter% would% follow%in%her%foot% steps.%She%tells%of%how%she%didn’t%let%a%lifeAchanging% diagnosis%cloud%her%dream.

I#started#dancing#at#a#very#young# age#and#went#on#to#get#a#Diploma# from#the#Commonwealth#Society# of#Teachers#of#Dancing.#I# attended#the#Valerie#Heston# School#of#Dance,#in#the#Perth# suburb#of#Myaree,#which#is# celebrating#its#60th#anniversary# this#year. When#Tayla#was#born,#all#I#could# think#of#was#how#soon#I#could# start#her#dancing.#When#she#was# diagnosed#with#Autism#Spectrum# Disorder#at#the#age#of#three,#I# decided#that#this#was#not#going# to#stop#her#from#at#least#trying#to# dance.#

She#was#four#when#she#Oirst# attended#class#at#my#old#dance# school#and,#because#of#my#history# at#the#school,#I#became#an# assistant#teacher.#This#was# advantageous#to#Tayla’s# progress. At#Oirst#Tayla#was#apprehensive# but#she#soon#took#to#it#like#a#duck# to#water.# With#dance#students#learn#what# they#need#to#and#then#repeat#it# over#and#over.#The#music#also# adds#to#the#experience. Tayla#now#has#many#exams# under#her#belt,#including#for# Tapping#and#Jazz.#

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These#were#all#mainstream#grading.# She#has#competed#in#troupes#over# the#years#and,#in#2014,#she#competed# with#the#Open#Troupe#for#the#Oirst# time.# This#was#a#total#success.#The#troupe# was#awarded#Oirst#in#the#Modern# section,#Oirst#in#the#Tap#section#and# second#in#the#Lyrical#section. Tayla#also#attends#the#‘Dance#Ability’# group.# This#class#has#been#running#for#the# past#four#years#and#is#open#to# students#with#a#disability.#

All#students#who#enter#the#‘Dance# Ability’#class#are#so#excited#when# they#arrive#and#they#leave#with#the# biggest#smiles#on#their#faces. Kerryl#Gill,#our#Principal,#says#“the# class#is#the#best#part#of#my#Saturday.# I#love#teaching#these#kids.” Kerryl#has#such#a#wonderful# relationship#with#all#of#the#kids.#They# all#admire#and#respect#her,#and#do# whatever#she#tells#them.# She#has#also#been#very#kind#and# tolerant#over#the#years,#embracing# Tayla#into#the#dancing#school#and# helping#her#to#achieve#her#goals.

It#allows#them#the#opportunity#to# dance.#

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“I couldn’t be any more proud of my beautiful daughter and of all her wonderful achievements”

The#group#has#been#competing#in# the#Commonwealth#Society#of# Teachers#of#Dancing#competitions# in#Perth#for#the#last#two#years.#

She#really#loves#going#to#school.

This#year#we#were#invited#to# Melbourne#to#compete#in#the# national#competition#where#the# students#showcased#their#talents.#

But#Tayla’s#passion#is#dance.

She#also#enjoys#swimming#and# playing#on#her#iPad.#

It#was#very#exciting#and#the#kids# had#an#absolute#ball.

She#really#enjoys#both#the#‘Dance# Ability’#class,#as#there#is#no# pressure,#and#the#discipline# required#to#dance#in#the# mainstream.#

The#‘Dance#Ability’#class#has# grown#rapidly#over#the#last#couple# of#years#and#they#are#all#great# friends.

She#thrives#at#dancing#and#I# couldn’t#be#any#more#proud#of#my# beautiful#daughter#and#of#all#her# wonderful#achievements.

Tayla#is#now#17QyearsQold.##She#is# a#sociable#young#woman#but#she# has#limited#language#and#poor# interaction#skills#with#her#peers.#

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Tayla my beautiful daughter

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SENSORY&PROCESSING JEAN LOTH Director, Melville Occupational Therapy

Sensory Processing. It’s a phrase now bandied around as though we all know exactly what it means and how it can help our children. Jean Loth Director at Melville OT, guides us through the full meaning and shares a few ideas to help you and your family.

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“you know your

child better than

the professional”

In#the#1970s#Jean#Ayres,#an#Occupational# Therapist,#postulated#the#theory#of# Sensory#Integration#as#“The#neurological# process#that#organises#sensation#from# one’s#own#body#and#from#the# environment#and#makes#it#possible#to# use#the#body#effectively#within#the# environment”. Now#we#can#reHlect#on#another#35#years# of#knowledge#and#veriHication#that#the# brain#has#far#more#resilience#than#we# give#it#credit#for.#We#now#know#for#sure,# that#Jean#Ayres#was#onto#something. Despite#years#of#questioning#as#to# whether#Sensory#Integration#in#its#purity# or#Sensory#based#therapy#has#a#place#in# our#Occupational#Therapy#tool#box,#it#has# continued#to#be#used.

Sensory#Processing#Disorder#is#now#the# over#arching#name#given#to#this#cluster# of#symptoms,#further#divided#into#the# sensory#modulation#side#and#the#praxic# side#of#the#disorder#(Lucy#Miller,# Sensational#Kids,#2006) This#article#will#deal#with#the#modulation# side#of#Sensory#Processing#Disorder. Sensory#Modulation#difHiculty#can# present#as#a#myriad#of#pictures.#A#simple# way#of#looking#at#it#is#to#ask#questions:# ”Is#the#child#over#or#under#responsive#to# stimuli?”#“Is#the#child#is#having#difHiculty# dealing#with,#and#dissipating#this# sensory#input#(touch,#taste,# proprioceptiveYvestibular,#sound,#visual# and#smell)?”

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The#behaviour#the#child#responds#with# may#be:

• frenetic,'7idgety'activity; • sucking,'chewing'–'hair,'nails'or' clothing; • banging,'crashing'behaviour; • swinging,'hanging,'racing,'pacing; • withdrawal'–'going'inward’;'or • becoming'anxious'and'over' reacting,'screaming,'crying. All#of#these#signs#overlap#into#autism#and# also#present#with#attachment#disorder. So'How'Do'We'Deal'With'This? Fifteen#years#of#experience#with# predominately#sensory#children#at# Melville#Occupational#Therapy#and#Extra# Lesson#for#Children#has#taught#us#that# every#child#is#unique#and#will#react# differently.

Here'are'a'few'ideas: Deep'Pressure#–#calms#the#nervous# system#through#the#deep#pressure# sensors#in#our#skin.# – – – –

Heavy'Work#–#calms#the#nervous#system# by#loading#receptors#in#the#muscles#and# joints#and#sending#calming#messages#to# the#brain#stem.# This#is#why#we#feel#good#as#adults#when# we#garden,#go#to#the#gym#or#go#for#a#run. – –

However,#the#base#rules#of#treatment#of# Modulation#Disorders#can#be#narrowed# down#to#the#three#Magic#Bullets#of:

• Deep'Pressure; • Heavy'Work;'and • Linear'Movement. You#need#to#be#able#to#observe#and#read# your#child#as#to#what#they#need.#As# parents#you#know#your#child#better#than# the#professional.#Your#child#will#guide# you#with#what#he/she#needs#(seek#your# cuddle,#withdraw,#Hind#a#quiet#place).# This#is#where#you#override#the#thought# that#it#is#“bad#behaviour”#and#apply#the# sensory#strategies.

weighted#products weighted#lapbag,#vest a#hug,#even#a#squeeze#of#hands#or#feet wearing#snug#clothing#beanie,# headband,#calming#clothing# underwear,#snug#shoes squishing#into#small#places

– –

chewing,#sucking,#sipping pushing,#pulling,#carrying#heavy#things bike#riding monkey#bars,#pushing#self#on#the#swing

Linear'Movement#–#swinging#or# jumping#is#calming#yet#alerting.#Spinning# is#alerting#and#is#good#for#the#under# responsive#child. – – –

swings,#trampoline,#pogo#sticks being#swung#by#a#parent sitting#in#a#rocking#chair/horse.

The#more#rhythmical#this#is#the#more# calming.

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“discover the calming measures and keep them close” Other'Hints •

• • • •

• •

Remove#stimuli#or#remove#the#child# from#the#noxious#stimuli#–#e.g.#turn# off#the#lights,#pull#the#blinds,# remove#posters,#use#a#hidey#corner# or#tent. Use#calming#background#music#of# beats#less#than#60#beats#per#minute# –#e.g.#Mozart,#Gregorian#Chants. Allow#deYbrief#time#in#your#day#for# you#and#your#child. Hold#rhythm#and#routine#in#your# day. Check#your#own#voice#–#is#it# calming? Do#sensory#measures#before#a# tricky#event###e.g.#going#to#the# dentist,#going#to#the#shopping# centre. Swimming#is#calming. Water#play#is#also#calming.

Go#play#with#your#child#and#discover# the#calming#measures#and#keep#them# close#to#pull#out#whenever#it#is# needed.#The#more#fun#it#is#and#the# more#engaged#you#are#with#your#child# the#more#he#will#beneHit,

Jean%Loth Director Melville+Occupa0onal+Therapy+ and+Extra+Lesson+for+Children 9+Hulme+Ct+ Myaree+6154 Tel:+(08)+9329+9500 melvilleotel@westnet.com.au

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email us at: contact@magswest.com Autism World Magazine - 48

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&&&&A&TRIP&TO&THE&DENTIST DANIELLE VESCOLANI M.ED

Nothing is more stressful for a parent than the dreaded trip to the dentist with your child. If the child has Autism with significant communication and sensory differences the trip can be downright traumatic. Danielle Vescolani M.Ed. has worked with children with autism for more than 20 years. She provides autism education for dental staff to help children with autism have a positive experience during their visit.

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Not%a%routine%trip Many#children#with#an#Autism#Spectrum#Disorder#can# have#communication#and#sensory#differences#that#may# make#a#routine#trip#to#the#dentist#a#challenging#and# sometimes#traumatic#experience.#Many#parents#will# often#skip#or#delay#routine#visits#because#of#the#stress# it#can#cause#which#can#lead#to#more#serious#procedures# needed#down#the#road.#There#are#proactive#strategies# that#parents#and#professionals#can#use#to#minimise# stress#and#ensure#that#the#child#has#the#best#experience# possible. Find%the%right%dentist% Word#of#mouth#and#referrals#from#other#parents#is#the# most#effective#way#to#Kind#a#good#Kit.#Find#a#few# candidates#and#give#them#a#call.##Ask#if#they#have# experience#working#with#children#who#have#autism# and#what#strategies#they#use#to#help#them#have#a#good# experience.#If#they#go#right#for#the#anesthesia#or# restraint#without#trying#more#proactive#approaches# then#look#elsewhere.#Also#ask#about#the#chemicals#used# in#their#materials.#If#your#child#has#chemical#sensitivity# or#GI#issues#you#may#want#to#discuss#possible#irritants# such#as#Kluoride#or#mercury.# Prepare,%prepare,%prepare!% Most#children#with#ASD#love#predictability#and#routine.# Going#to#the#dentist#every#six#months#can#be#included# into#their#"life#routine"#by#using#social#stories#and# visuals.#Social#Stories,#developed#by#Carol#Gray,#are#a# great#way#to#visually#"explain"#to#a#child#why#going#to# the#dentist#for#a#checkTup#is#important.#Once#you#make# an#appointment#mark#it#on#a#calendar#to#show#your# child#when#this#event#is#going#to#happen.#Try#to#not# make#a#big#deal#about#the#appointment#by#keeping# information#very#matter#of#fact#and#simple Go%on%a%"preAvisit"% Ask#your#dentist#if#they#would#be#willing#to#let#your# child#visit#to#become#familiar#with#the#building.#Again,# mark#it#on#a#calendar#so#your#child#is#aware#of#the# event.#Allow#them#to#meet#the#staff,#sit#in#the#exam# chair#and#show#them#some#of#the#tools#that#will#be# used.# Being#more#familiar#with#the#physical#space#can#make#a# huge#difference#on#exam#day.#Some#dental#practices# post#a#virtual#tour#of#their#facility#on#their#website.## Also,#establish#your#level#of#involvement#during#the# appointment.##Discuss#if#you#should#you#be#in#there# with#your#child#or#not.##

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The%week%before% Now#you#can#start#preparing#for#what#will#happen# during#their#exam.#A#visual#schedule#of#the#order#of# events#would#provide#some#predictability#as#what#will# happen#during#their#checkTup.#Visuals#can#be# homemade,#found#online#or#your#child's#teacher#may# make#one#for#you.#Try#to#keep#the#pictures#and#format# similar#to#what#your#child#uses#at#home#and#school.# MayerTJohnson#Boardmaker#pictures#are#the#most# widely#used.#Take#the#visual#schedule#with#you#on#the# appointment. The%day%of%the%appointment% Call#ahead#to#see#if#they#are#on#schedule#or#running# behind#to#avoid#waiting#too#long.#You#could#also#make# payment#arrangements#over#the#phone#in#case#you# need#to#make#a#speedy#escape#during#the#visit.#Bring#a# comfort#item#or#Kidget#toy#for#your#child#to#hold#during# their#exam.##Most#paediatric#dentist#ofKices#have#video# monitors#suspended#above#the#exam#chair#for#the# children#to#watch.#If#your#child#has#a#preferred# character#or#TV#show#that#they#like#ask#if#you#can#bring# your#own#video#in.#If#you#know#that#your#child#will# have#a#strong#aversion#to#the#gritty#pumice#used#for# cleaning#bring#in#your#child's#favorite#tooth#paste#to# use#instead.# During%the%exam%% Give#the#staff#a#heads#up#if#your#child#has#sensory# issues.#If#your#child#reacts#to#bright#light,#sunglasses# can#be#worn.#If#they#don't#like#the#sound#of#the#drill#or# suction,#sound#canceling#headphones#work#great.#Most# paediatric#dentists#and#hygienists#are#great#about# talking#children#through#cleanings#and#procedures#so# that#the#child#knows#what#to#expect.#Just#ask#that#they# keep#the#information#simple#and#direct.#If#you#sense# that#your#child#may#become#anxious#during#their# procedure#see#if#they#would#be#able#to#wear#the#leaded# apron#used#during#xTrays.#The#weight#of#the#apron#can# provide#deep#pressure#and#comfort.# Remember%to%stay%calm! Children#can#react#to#their#own#parent's#anxiety.#If#all# goes#well#and#your#child#has#a#good#experience,#send#a# thank#you#to#the#dental#ofKice#staff.#Establishing#a# positive#relationship#will#help#with#the#next#visit. Danielle%Vescolani%M.Ed Danielle#has#worked#with#children#with#autism#for#more#than# 20#years.#She#is#owner#of#DVAssist#Autism#Services#LLC,#

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eat play Learn

Essential thinking on food, education and play from the most respected minds across the Autism world.

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INTRODUCING GAPS INTO YOUR DIET Jacinta O’Connor

One of the diets often recommended for those with autism is GAPS, created by Dr. Natasha Campbell-McBride. Certified GAPS Practitioner Jacinta O’Connor guides us through the first steps to following the GAPS diet.

The!GAPS!Nutritional!Protocol!is! designed!to!heal!the!gut,!to!normalise! the!gut!Dlora!and!remove!toxicity!out! of!the!body.!GAPS!Nutritional!Protocol! needs!to!be!followed!long!enough!for! the!person!to!heal.! Depending!on!the!severity!of!the! condition,!the!age!of!the!person!and! other!factors,!the!treatment!can!take! from!18!months!to!several!years. ! Upon!discovering!the!GAPS!Protocol,! some!people!launch!straight!into!the! GAPS!Introduction!Diet!overnight! from!a!Standard!Western!Diet.! While!this!enthusiasm!is!admirable,!it! often!results!in!the!protocol!being! followed!only!for!a!just!short!period! of!time. ! The!GAPS!Protocol!encompasses! many!lifestyle!changes!which!take! time!and!energy!to!implement.!To! maximise!one’s!chances!of!successful! implementation,!it!is!important!to! taper!into!the!protocol!using!a! timeline!that!takes!into!account!both! the!individual!or!family’s!lifestyle!and!

circumstances,!and!the!health!of!the! individual(s).! A!tapering!in!of!the!GAPS!Protocol! allows!the!changes!to!be!more!easily! integrated!into!the!person’s!lifestyle.! Using!this!methodology!results!in! greater!success!of!implementing!and! sustaining!the!Protocol.! For!instance,!you!may!take!two!weeks! to!change!your!breakfasts!over!to!be! GAPS!compliant.! You!may!then!look!at!lunches!and! take!another!two!weeks!to!move!your! lunch!routine!to!be!in!line!with!the! GAPS!Protocol.! Once!you!are!feeling!conDident!with! GAPS!breakfasts!and!lunches,!move!to! changing!over!dinners!and!then! Dinally!snacks. ! This!tapering!is!important!to!manage! the!die?off!reaction,!which!is!common! when!you!move!into!the!GAPS! Protocol.!

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This!reaction!refers!to! the!effect!a!person!feels! when!their!dietary! and/or!probiotic! supplement!changes! result!in!the!killing!off! of!some!pathogens!in! the!gut.!These! pathogens!release! toxins!which!cause! unpleasant!symptoms.! Those!symptoms!are! quite!individual!and! can!range!from!a! headache,!to!nausea,! moodiness,!bed! wetting,!inability!to! cope!with!stress!and! inability!to!concentrate.! It!is!often!seen!as! exacerbation!of!the! original!symptom! picture,!which!is!why!it! is!extremely!important! to!manage!the!die?off! response!to!ensure!the! person’s!body!can!cope! with!clearing!the! toxins.!

Dr Campbell-McBride recommends the GAPS Introduction Diet for the following: Individuals with severe digestive disorders such as ongoing diarrhoea (this may be alternated with episodes of constipation), abdominal pain, bloating, flatulence, etc. It is particularly important to follow the Introduction Diet for people with all inflammatory bowel conditions, such as Crohn’s Disease and Ulcerative Colitis. Some cases of stubborn constipation respond well to the Introduction Diet (children in particular). For autistic children, most of whom have serious digestive problems (which may not have been diagnosed). Depending on the severity of the digestive symptoms, they can go through the GAPS Introduction Diet slower or quicker, guided by the symptoms. Children and adults diagnosed with Diabetes - Type One or Celiac Disease. These people have serious damage to their gut lining, which needs slow methodical healing. For children and adults with severe learning disabilities, such as Down Syndrome, Cerebral Palsy and severe Autism. For people with severe food allergies and intolerances, as their gut lining is very damaged and needs slow healing. Diarrhoea of any origin: from a virus, bacterium, parasite, traveller’s diarrhoea or a ‘tummy bug’.

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Additionally,!if!someone!has!an! overgrowth!of!yeasts!in!their! gut,!and!they!reduce!their! reDined!carbohydrate!intake!too! quickly,!their!blood!sugars!drop! too!low,!resulting!in! Hypoglycaemia.!! A!common!sign!of! Hypoglycaemia!on!the!GAPS! Introduction!Diet!is!vomiting.!!A! tapering!in!of!the!GAPS!Protocol! will!assist!in!preventing!this. ! On!occasion!there!is!confusion! as!to!whether!a!person!should! commence!with!the! Introduction!Diet!or!the!full! GAPS!Diet.

Dr Campbell-McBride recommends starting with the full GAPS Protocol where:The person has ADHD, ADD, Dyslexia, Dyspraxia and various other psychological problems) without the severe digestive symptoms such as diarrhoea, abdominal pain, bloating, flatulence etc. People with autoimmune diseases (such as MS, various forms of Arthritis, Lupus and other conditions).These people do very well on the full GAPS Diet, using the GAPS Dairy Introduction Protocol. The person has always been constipated and virtually never had diarrhoea or loose stools. On the Introduction Diet we remove fibre and these people may get more constipated, so it is a good idea to start from the full GAPS Diet. As the gut flora changes the person’s bowel habits may change, and those who were ‘always constipated’ may start getting loose stools. If there is a need for doing the GAPS Introduction Diet, at that stage it can be implemented. The person is a busy adult who has to travel a lot, eat what is available and cannot dedicate much time to food preparation. People are hesitant to change their diet at all or those who, for whatever reason, may find it very difficult. Full GAPS Diet is easier to implement and will bring improvements.

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In!the!majority!of!cases,!I!recommend! initially!tapering!from!a!Standard! Western!Diet!to!the!full!GAPS!Diet.!

The!whole!digestive!function!gets! restored,!so!multiple!nutritional! deDiciencies!start!resolving.!

When!the!full!GAPS!Diet!has!been! maintained!successfully!for!a!period! of!two!to!three!months,!I!recommend! commencing!the!Introduction!Diet,!for! those!where!the!Introduction!Diet!is! deemed!necessary.!

As!the!person!becomes!better! nourished,!the!immune!system!starts! functioning!again,!taking!under! control!various!pathogens!in!the! body,!such!as!candida,!viruses!and! bacteria.!

For!those!taking!school?aged!children! through!the!Introduction!Diet,!this!is! best!commenced!during!a!school! holiday!period.!

At!the!same!time!the!immune!system! is!re?balanced,!which!removes!the! basis!for!allergy!and!autoimmune! development!in!the!body.!

That!way,!the!parents!can!fully! support!their!child!through!the!initial! period!of!the!Introduction!Diet,!when! their!child!may!well!be!feeling!very! tired!and!irritable!and!in!need!of!more! rest!than!normal,!detoxiDication!baths! and/or!swimming!in!the!ocean.

Instead!of!attacking!its!own!tissues,! the!immune!system!starts!clearing! pathogens!and!toxins!out!of!the!body. ! Finally!the!person’s!detoxiDication! system!starts!working.!In!GAPS! patients!this!system!does!not!work! effectively,!so!toxins!accumulate.!

As!the!gut!Dlora!starts!normalising!it! produces!less!and!less!toxins!so!the! level!of!toxicity!in!the!body!drops.! As!the!gut!lining!starts!healing!and! sealing,!food!allergies!and! intolerances!disappear;!the!person! starts!digesting!food!properly!before! absorbing!it.!

As!the!detox!system!starts!working! again,!the!levels!of!various!toxins!in! the!body!reduce,!which!in!turn! stimulates!more!healing!and!recovery.

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Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and at Autism West in Nedlands, Western Australia

nutritionmatters@ozemail.com.au

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MY GAPS EXPERIENCE Julie Gardiner

My!son!Aidyn!was!diagnosed!with!high! functioning!autism!Dive?years?ago,! when!he!was!six!years!old. Over!time!he!has!struggled!with!peer! relationships,!reading,!eye!contact,! aggression,!allergies,!gut!issues,!self! control!and!so!much!more.

I!spent!hours!online!researching,! talking!with!nutritionists,!specialists,! scientists!–!anyone!I!could!Dind!who! might!provide!an!answer!because!I!had! a!strong!feeling!that!food!was!adding! to!his!problems.

He!had!no!interest!in!being!social!–! ever.

I!came!across!GAPS.!I!spent!12!months! researching!the!diet!but!it!looked!so! hard.!I!was!in!denial!that!the!diet!could! make!a!difference.

He!was!gluten!and!casein!free!!for! many!years!and!I!felt!that!this!just! wasn't!helping!him!enough.

Then!I!came!across!a!name!–!an! acquaintance!I’d!know!years!ago.!Sally! Gray!at!Real!Healthy!Kids.!!

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I!reached!out!to!her,!hoping!that!she! would!remember!me!and!asked!for! help. Yes,!came!back!the!reply.!"Why!had! you!let!things!get!so!bad?"!she!asked. We!immediately!transferred!our!whole! family!onto!the!GAPS!diet.! Three!months!later!we!crashed!and! burned.!I!thought!I!could!do!it!all.!I!was! wrong.!Supermum!I!wasn’t. So!we!started!again.!Slowly.!One!meal! at!a!time.

Now!two!years!later!–!95!per!cent!of! everything!Aidyn!eats!is!full!GAPS.!The! results!make!me!cry!every!time!I!tell! people. Within!six!to!eight!weeks!Aidyn!made! eye!contact!with!anybody.!He!actually! looked!at!people.!His!reading!jumped! from!not!reading!to!reading.!And!he! became!the!kid!doing!what!other!kids! wanted!to!do.!He!wanted!to!play!soccer! so!he!asked!to!join!the!soccer!club!at! school.!We!have!now!completed!two! seasons.

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Autism World Magazine - 60

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Birthday Parties Catherine Crestani and Diana Wolf Birthday#parties#can#be#both#an#exciting#and#traumatic#event#for#a#child#with#ASD.#Parties#are#riddled#with# social#expectations,#loud#noises,#overstimulation#from#colours#of#balloons,#food#etc.#and#unpredictability.# All#these#issues#combined#can#take#away#the#‘fun’#aspect#of#your#child#attending#and/or#having#a#party.# The#best#way#to#prepare#your#child#is#to#give#them#as#much#information#as#possible#and#practice#party# activities.#A#social#story#and/or#video#from#a#child’s#party#can#be#a#great#way#to#help#with#this.# Hosting%a%party When#hosting#a#party#for#your#child#with#ASD,#you#can#have#some#control#over#what#happens.#Here#are# some#tips#to#assist#with#this: Make#sure#your#child#knows#when#the#party#is.#Having#a#calendar,#or#a#countdown#can#help#with# this. Choose#games/activities#you#know#your#child#enjoys#as#well#as#their#friends.#Make#sure#you#practice# these#beforehand#as#well.# Explain#to#your#child#what#will#happen#at#the#party.#Having#a#social#story#and/or#visuals#may#help.# Try#and#limit#any#sensory#input#that#may#overwhelm#your#child,#e.g.#if#your#child#is#petriKied#of# balloons,#have#them#deKlated#in#the#party#bag#to#go#home. Choose#food#that#your#child#enjoys#but#that#you#also#know#will#not#overstimulate#them#(e.g.#red# snakes).#

Attending%a%party Attending#a#party#is#a#lot#harder#to#control#and#a#lot#more#stressful.#As#a#parent#you#can#try#and#phone#the# host#of#the#party#to#get#as#many#details#as#possible#such#as#who#is#coming,#what#food#there#will#be#and#most# importantly#what#games#will#be#played.##It#is#important#to#reinforce#with#your#child#the#need#to#share#and# take#turns.#Some#tips#to#help#prepare#your#child#are: Practicing#party#games#(e.g.#passTtheTparcel,#musical#chairs,#pin#the#tail#on#the#donkey…); Emphasising#the#present#is#for#another#child#and#not#for#your#child; Explaining#to#your#child#what#may#happen#at#the#party#(e.g.#it#might#be#noisy); Relating#your#child#to#people#they#already#know#(e.g.#your#friend#Bill#will#be#there);#and Practice#singing#‘Happy#Birthday’.#

Catherine Crestani and Diana Wolf  Principal Speech Pathologists Nepean Speech & Language Services

www.nsls.com.au

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UNIVERSITY DAYS A Brand New Program for Tertiary Students on the Autism Spectrum and Related Conditions

Since!the!beginning!of!the!2014! academic!year,!Curtin!University,!in! Perth,!Western!Australia!has!taken!the! much?needed!step!of!creating!specialist! mentoring!for!tertiary!students!on!the! autism!spectrum!and!related!conditions.! Dr!Jasmine!McDonald!and!Theresa!Kidd,! the!founders!and!coordinators!of!the! Curtin!Specialist!Mentoring!Program!

(CSMP),!say!that!they!Dirst!realised!that! there!was!a!need!for!such!a!program! when!research!indicated!that!it!was! difDicult!for!students!in!tertiary!studies! with!high!functioning!autism!to!Dind!the! support!they!needed!to!do!the!best!in! their!studies.! !

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The!program!pairs!postgraduate! Occupational!Therapy!and!Psychology! students!with!undergraduate!students! on!the!autism!spectrum!and!those!with! related!conditions.! The!mentor’s!brief!is!to!improve!their! mentee’s!retention,!academic!success! and!well?being!at!university.! CSMP!has!also!incorporated!a!weekly! Curtin!Social!Group!(CSG)!to!help!this!

group!of!students!have!a!safe!space!in! which!to!socialise!and!create!a!sense!of! belonging!at!university.”!–Though!the! program!is!only!in!its!Dirst!year,!and! funding!has!been!assured!for! continuation!next!year,!it!is!the!hope!of! all!involved!that!similar!programs!will!be! put!in!place!at!tertiary!learning! institutions!across!Australia!so!that!all! students!can!receive!the!support!they! need.

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Jeremy%Hancock%% The%Mentee Jeremy, in grey. focused on his next move

“For#those#of#us#living#with#autism#and# related#conditions,#university#can#be#a# scary#place.# “The#uncertainty#is#the#worst#part#for#me# personally;#I#never#know#how#the#people# I#talk#to#will#react#or#what#I#am#supposed# to#say.#I’ve#accepted#that#this#will#always# be#difHicult#for#me,#because#it’s#not#as#if# it’s#a#disease#that#can#be#cured,#or# something#that#will#go#away#over#time.# “Everyone#has#their#own#challenges#in# life,#and#luckily#for#me#and#the#other# students#in#the#mentor#program,#this#is# one#we#can#get#some#help#for.# “The#best#antidote#for#anxiety#is#having# someone#with#you.#The#term#I#most#often# hear#is#“support#person”#which#just# about#sums#up#the#entire#program.# “The#mentors#are#there#to#offer#a#friendly# voice#whenever#you#like,#I#usually#meet# up#with#my#mentor#at#Curtin#once#a#

week,#we#have#a#nice#chat#and#she#goes# with#me#to#places#like#the#careers#ofHice,# and#advises#me#on#what#to#say#over#the# phone#when#I#have#to#make#an# appointment.# “She’s#a#real#gem#and#I#know#that#she’s# always#willing#to#help.#I#even#have#her# mobile#number#and#I#can#text#her# whenever,#which#I#think#makes#a#big# help#in#terms#of#making#a#connection.#In# the#words#of#another#mentee,#‘I've#been#a# part#of#programs#like#this#before#and# nothing#compares#to#support’.# “What#I#think#does#even#more#good#for# the#conHidence#and#general#wellYbeing#of# us#mentees#is#the#weekly#social#group.#I’ll# be#honest;#it#was#a#bit#awkward#at#Hirst.# Well,#it#was#a#lot#awkward#really,#but#it# soon#became#one#of#the#highlights#of#my# week.#It#was#a#place#where#nobody# wanted#anything#from#me#except#to#be#

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Jeremy%

friends.#I#didn’t#have#to#worry#about# anything#and#I#could#just#be#myself.##

forward#to#during#the#week,#along#with# some#new#friends.’#

“It’s#also#a#good#chance#to#work#on#our# social#skills,#maybe#we#feel#a#tiny#bit# stupid#role#playing#sometimes,#but#it’s# good#to#know#how#to#Hit#in#more#easily# rather#than#just#standing#there#in# ‘conversation’#not#saying#anything#and# generally#radiating#awkwardness.#That# was#certainly#my#usual#tactic# beforehand.#

“In#the#last#few#weeks,#some#mentees# have#even#started#coming#to#the#social# group,#who#were#too#uncomfortable#to# do#so#before,#giving#them#a#chance#to#get# to#know#everyone#there#and#join#in#on# some#of#the#games,#social#activities#and# conversation.#

“I’m#not#the#only#one#who#feels#there#has# been#improvement,#a#number#of#other# mentees#are#really#pleased#with#being#in# the#program#themselves.# “Another#said:#‘The#mentor#program#for# me#has#given#more#conHidence#in#what#I# want#to#do#when#I#leave#university#and# has#also#given#me#something#to#look#

“This#is#a#great#step#towards#opening#up# and#becoming#more#and#more#at#ease#in# situations#that#are#usually#nerveY wracking.#‘Being#able#to#recognise#people# around#campus#makes#the#place#feel#less# big#and#full#of#strangers’,#said#another.## It’s#clear#from#this#that#being#a#part#of#the# program#has#been#a#positive#inHluence#on# everyone#participating#in#it,#and#we#all# look#forward#to#continuing#the#program# and#group#in#the#future.”

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Ashley%Pelton% The%Mentor “For#those#completing#their#tertiary# studies,#university#can#be#a#scary#place.#I# am#currently#in#my#sixth#year#of# university,#and#each#year#I#Hind#myself# confronted#with#new#challenges.#For#me,# the#only#way#around#these#obstacles#has# been#to#ask#a#lot#of#questions.#Jeremy# can#attest#to#the#fact#that#sometimes#I# may#ask#too#many#questions,#however,#it# has#continuously#given#me#some#of#the# support#and#answers#that#I#needed#to# get#through#the#stress#and#uncertainties# of#university#life.# “As#I#prepare#for#my#Hinal#year#of#my# Occupational#Therapy#degree,#my# anxiety#lies#within#the#conHidence#of#my# practical#skills.## “The#Curtin#Specialist#Mentoring# Program#has#not#only#allowed#me#to# develop#skills#for#my#future#practice,#but# I#feel#as#though#each#student#who#is#a# part#of#the#mentoring#program#has#also# become#my#mentor#themselves.#They# remind#me#that#anxiety#is#present#in# most#students’#lives#in#one#form#or# another,#and#that#we#all#need#support#in# different#ways.#

“This#feeling#of#not#being#alone#in#what# can#often#feel#like#a#big#scary#campus#has# been#most#apparent#in#the#weekly#social# group#meetings.#In#the#group#we#have# the#opportunity#to#discuss#our# challenges,#brainstorm#solutions,#and# work#on#skills#that#we#believe#could#help# us#improve#our#university#experience.# “Often#this#is#done#while#playing#games,# like#Jenga#and#Cluedo#and#is#by#no#means# a#structured#group#therapy#session#that# you#may#experience#at#a#counselling# service.#It’s#a#casual#and#safe#space# where#everyone#can#be#themselves.# Most#importantly,#the#social#group#is#fun.# One#mentor#told#me#that:#‘all#of#a#sudden# you#see#them#taking#on#board#what#you# have#said,#encouraging#fellow#mentees# to#go#out#and#try#things,#and#inviting# them#along#to#study#groups’. “Many#friendships#have#been#formed# and#naturally#the#mentors#and#mentees# have#developed#social#skills,#including# techniques#for#having#a#conversation# with#someone#you#may#not#know#well,# or#developing#new#ways#to#ask#your# tutor#for#help.## Autism World Magazine - 66

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Ashley%

“The#social#group#has#transformed#from# being#a#room#of#conversation,#mostly# being#directed#by#the#mentors,#to#a#room# full#of#laughter#and#conversation# between#all#members#of#the#group.# “It#is#evident#that#we#all#enjoy#meeting# up#weekly;#most#members#haven’t!missed! a!single!week!!

“You!will!discover!that!many!of!the!things! you!are!worrying!about!are!thoughts!that! have!gone!through!all!of!our!minds.!Best!of! all!is!that!you!do!not!even!have!to!share!or! discuss!these!thoughts,!you!are!welcome! to!come!along!just!for!the!fun!and!I!bet!you! that!only!positivity!will!come!out!of!the! experience.”

“Another!mentor!told!us!that!‘being!a!part! of!the!CSMP!has!been!an!incredibly! rewarding,!memorable!and!an!invaluable! learning!experience’.! “I!don’t!believe!that!I!would!have!seen!the! improvement!in!the!students’!conDidence! without!the!support!they!have!received! from!being!a!part!of!the!social!group.! “There!are!many!more!ideas!and! discussions!that!can!be!generated!in!a! group!setting!that!ultimately!contribute!to! enhancing!our!well?being.!

For%more%information%on%the%West% Australian%Curtin%University%Specialist% Mentoring%Program%(CSMP)%please% contact:% Dr%Jasmine%McDonald% Jasmine.Mcdonald@curtin.edu.au Theresa%Kidd% theresa.kidd@postgrad.curtin.edu.au

“My!advice!to!anyone!thinking!about! joining!the!mentoring!group!is!to!come!be! a!part!of!it;!the!more!the!merrier!!

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Let’s talk about

stimming Nelle Frances Stimming, or self-stimulating behaviour, is defined as the repetition of physical movements or sounds, or repetitive movement of objects. It is common in individuals with Autism Spectrum Disorder (ASD). Examples of stimming include: hand and finger mannerisms – like finger-flicking and hand-flapping; rocking the body back and forth while sitting or standing; posturing – holding hands or fingers out at an angle or arching the back while sitting; visual stimulation – looking at something sideways, watching an object spin or fluttering fingers near the eyes; repetitive behaviour like opening and closing doors or flicking switches; chewing or mouthing objects; and listening to the same song or noise, over and over. Autism World Magazine - 68

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“when the system is shut down all reaction is limited” My son hand flaps; my ASD Dad spun his wedding ring constantly. Some forms of stimming can be viewed as self-injurious behaviour, e.g. head-banging, hand-biting, face or sore picking, or excessive self-rubbing and scratching. Individuals on the Autism Spectrum stim to help themselves to manage anxiety, fear, anger or even excitement, but most importantly to help deal with overwhelming sensory input. So when the world is too bright, too loud, too smelly, too scratchy or too sour, stimming provides comfort and helps to soothe. These repetitive behaviours, or stims, should be a signal to those of us around them, that they are becoming agitated or overwhelmed, and we need to take action. To understand how self-stimulatory behaviours calm and soothe we first need to understand the biological processes inherent to the characteristic. Studies show that individuals with Autism Spectrum Disorder have much higher levels of the enzyme dopamine beta hydroxylase in their systems than neurotypical individuals. The presence of this enzyme is directly linked to behaviours such as repetition, agitation and aggression.

All repetitious activity, such as rocking, flapping, clicking, finger flicking, rocking, head banging or pacing, results in the release of endorphins through the system. Endorphins in our system reduces the sensation of pain and have the ability to block pain. In other words, when endorphins are present, sensory reaction is decreased or neutralised completely. With the use of self stimulatory behaviours (stims) individuals with ASD are able to purposely, albeit unknowingly, flood or overload their sensory system in order to shut it down completely. Knowing this it becomes obvious that we must monitor an ASD child’s production of endorphins, because the presence of excess endorphins causes them to lose the ability to respond to any stimulation. This means that children with ASD may miss much of what they are meant to be learning. While blocking out all sensation by the production of endorphins might seem like a simple and easy way of coping with overstimulation for individuals with ASD, those of us caring and working with them must realise that when the system is shut down all reaction is limited. Autism World Magazine - 69

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Nothing will get in or out. They won’t recognise hunger, tiredness, body temperature, full bladder/bowel or pain. So we need to closely monitor self stimulatory behaviour to find a balance between a calm child/adult and one who’s totally shut down.

monitor and/or set limits on the use of repetitive behaviors. We need to gently and tactfully let them know times and places when stimming is acceptable, and establish a balance that works for them and for you.

All physical exercise causes the release of natural endorphins into the system that can help to ‘protect’ the person with ASD without switching off the sensory response and causing shutdown. Exercise such as walking, running, and swimming is extremely beneficial in their daily routine as a preventative measure. It may be used during periods of agitation to help calm them. In this way exercise is used to develop appropriate social responses, e.g. it is more acceptable to jump on a trampoline rather than on the furniture. We should also realise that stimming behaviours have social consequences for individuals with Autism Spectrum Disorder – they are a visual reminder that they’re different from their peers. So weigh up their social aptitude, and

Nelle Frances - author of the Ben and His Helmet books, - co-author Sustainable Social Skills Program - Sensory Detective ™ Training Workshops - Sensory Detective program (5-12's) - Facilitator of AS Adult Social Group (18-35's) -

www.aspergerchild.com Autism World Magazine - 70

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HOW

?

ABOUT THEM APPLES THE CALMING SURF

CLICK ON PICTURE WHEN ONLINE TO VIEW OUR

AMAZING VIDEO

http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s Here is a chance again to watch our terrific video The Calming Surf. Supported by the StandUp.Foundation Autism World Magazine - 71

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Unsung Hero - Jaeden Maddox, by Partrice Maddox, Alabama My five-year-old non verbal ASD son made the A+ Honor Roll at school this week. Please congratulate him. He has come a long way.

TO NOMINATE YOUR UNSUNG HERO EMAIL: STORY@MAGSWEST.COM AND DON’T FORGET TO SEND PHOTOS

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“I found a way to communicate with my son using the different plush dolls from Nintendo.  He loves to talk through them. So I select one and talk to him through them. It just put the biggest smile on his face.�

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Speed humps +Alyssa+Aleksanian

Things you can’t avoid in built up areas

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“We are the Lamborghinis of emotion” “You’re!being!unreasonable.”! “You’re!making!a!mountain!out!of!a!molehill!”! “You’re!being!too!sensitive/exaggerating/taking!it!way!too!personally.” Welcome!to!‘Aspie!World’.! First!stop:!High!Speed!Emotions.! We!are!the!Lamborghinis!of!emotion:!300km!per!hour!in!less!than!three!seconds.! Our!world!can!turn!on!a!dime.!A!good!day!can!quickly!turn!bad;!a!comment!or!an! action,!even!our!own!thoughts,!may!be!all!it!takes!to!turn!a!day!sour.!Sour!for!an! Aspie!isn’t!really!relative.!It!is!absolute,!and!will!end!in!one!of!two!emotional!dead! ends:!the!shut!down!or!the!melt!down.!

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Responses'to'Speed'Humps'No.' 1: The'Shut'Down The#best#way#to#describe#a#shut# down#is#a#state#of#absolute# isolation.#The#surrounding#air# becomes#dense#and#frozen,# suspended#in#time.# You#become#paralysed#in# movement;#thought#becomes# heavy,#immoveable;#all# communication#is#cut#dead.# Gravity#becomes#a#sadness# swathed#around#your#shoulders# driving#you#into#the#ground.#There# seems#no#way#out. There#have#been#many#times#in#a# relationship#when#I#sat#in#the# middle#of#castQoff# misunderstandings,#with#1000# images#swirling#uncontrollably#in# my#mind;#yet,#I#couldn’t#speak#any# of#it.# The#bridge#between#my#thoughts# and#my#mouth#was#broken.#It# wasn’t#that#I#didn’t#want#to#speak,# I#physically#couldn’t.#

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One#could#use#‘sadness’#to#describe#this# state,#but#this#sadness#goes#deeper,#right# down#to#one’s#very#core.#It#can#be#the# beginning#of#the#depressive#state#Q#a# frightening#way#to#slide#down#the#rabbit# hole.# Some#Aspies,#most#often#men,#can#push# their#frustration#outward#and#express# themselves#through#a#melt#down.# We#women,#often#being#a#more#reOlective# bunch,#tend#to#direct#the#anger#or#sadness# inward,#leading#to#a#shut#down.## For#an#Aspie,#these#periods#of#being# frozen,#unable#to#speak,#will#always# happen;#it#comes#with#our#own#personal# territory.# But#we#need#to#remember#that#we#can# lessen#their#frequency#by#being#careful# who#we#spend#time#with.#If#past# experience#says#a#‘shut#down’#will#happen# more#frequently#with#certain#people,#do#all# you#can#to#avoid#those#people.# It#may#be#a#just#throw#away#comment#or# an#illQconsidered#action#made#by#them#but# to#you#it#may#mean#damage#and#days#of# recovery.# Why#spend#time#with#people#that#make# you#cry#on#the#inside?##

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Responses%to%Speed%Humps%No.%2:% The%Melt%Down This!is!‘the!other’.!In!my!mind!it!is!the! opposite!of!the!‘shut!down’.!And!it!is!an! entirely!different!beast.! Have!you!ever!felt!so!angry!that!your!Dists! start!to!clench,!your!jaw!stiffens!and!your! blood!starts!to!boil?!Waves!of!heat!begin! to!pour!over!you!and!you!feel!the!pressure! build!within?!That!is!‘Oncoming!Rage’.! Your!average!PNT!(predominant! neurotype)!can!stop!themselves!here:!a! slammed!door,!a!well?timed!distraction!or! a!kind!word!from!someone!can!release!the! steam!and!the!potential!rage!is!averted.! Someone!with!AS!however,!once!on!this! path,!Dinds!it!impossible!to!avoid.!

The!pressure!must!be!released.!If!not!by! physical!means!(crying,!stomping,! screaming,!smashing)!then!it!is!usually! directed!within!?!on!themselves.! It!takes!so!much!energy!to!have!a! meltdown;!it’s!like!being!forced!to!do!a! thousand!commando!rolls!through!a! mineDield.!The!physical!and!mental!black! exhaustion!can!last!for!days.! Do!you!think!any!Aspie!would!choose!to! react!in!this!way?! We!don’t!have!the!luxury!of!choice.! A!build!up!of!angst,!worry!and!sadness! eventually!has!to!be!expressed,!and! unfortunately!if!there!is!no!other!outlet,!it! is!expressed!outward:!carpet!bomb!style.! Autism World Magazine - 78

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Don’t%be%trigger%happy:% Watch%for%the%Signs At!the!end!of!an!unhappy!day,!many!an! Aspie!will!tell!you!that!they!woke!up!that! morning!feeling!A?OK.!They!had!no!idea! the!day!was!going!to!go!pear?shaped.! But!I’ve!often!wondered!?!is!that!really!the! case?!! When!I!reDlect!honestly!after!a!rotten!day,!I! realise!that!there!was!some!background! static!that!lead!to!the!day!being! emotionally!charged.! I!may!have!been!tired!or!unwell.!I!may! have!spent!a!few!days!mulling!over! someone’s!inconsiderate!action!or!just!

simply!trying!to!Digure!out!what!the!hell! they!meant!when!they!said!something.! I!may!have!despaired!about!violence!on! the!news!or!worried!how!the!homeless! could!possibly!survive!in!the!dead!of! winter.! The!point!is,!there!is!always!something:!a! platform!that!we!build!our!day!upon.! If!the!foundations!of!our!day!are!rocky!or! sad,!is!it!any!wonder!that!the!entire!day!is! eventually!coloured!by!it?! As!the!saying!goes:!Like!attracts!like.! So,!what!are!the!triggers!to!a!shut!down!or! melt!down?!Some!Aspies!will!say!they! have!deDinite!triggers.!

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Others!aren’t!so!sure.!I!know!that!I!have!some! deDinite!triggers,!but!with!other!things!?!what! bothers!me!one!day!may!not!bother!me!the!next.! But!it!is!vital!to!understand!that!a!lot!depends!on! one’s!physical!and!emotional!wellbeing.! Emotional!or!physically!fragility!means!being!more! susceptible!to!your!triggers.

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There!are!deDinite!times!when!we!know! we!shouldn’t!react!to!what!seems!like! insigniDicant,!trivial!details,!but!our! emotional!reactions!can!come!in!such!a! violent!rush!that!it!surprises!even!us.! I!know!it’s!unreasonable!to!get!terribly! upset!when!I!can’t!Dind!something!where! I’m!sure!I!placed!it!earlier.!I!like!to!think!I! know!precisely!where!everything!is.!It!is! my!way!of!having!some!control!over!my!all! too!chaotic!world.!But!as!I!don’t!live!alone;! things!in!my!house!get!moved.!! I!can!stomp!and!slam!in!frustration!or,! alternatively,!panic!when!I!can’t!Dind!a! certain!item!I!need.! It!may!seem!ridiculous!that!tempers!can! Dlare!when!it!comes!to!things!like!this!but!

it!is!easier!to!understand!when!you!take! the!day’s!previous!background!events!into! account;!an!overloaded!physical!and! emotional!state!and!a!genuine!need!to! reduce!the!distressing!chaos!in!the!Aspie! world.! With!both!shut!downs!and!melt!downs,!its! important!to!watch!for!the!warning!signs.! Often!someone!with!AS!won’t!know!their! own!triggers,!and!either!reaction!can!take! them!unawares.!But!if!you!have!AS!you!can! become!familiar!with!the!precursors:!you! may!feel!the!slight!wobble,!the!turn!in! your!stomach,!or!feel!yourself!start!to! slide.! Whatever!is!your!‘beginning’,!don’t!hang! around;!nothing!much!can!be!gained!from! staying!where!you!are.!

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Remove!yourself!from!the!situation!and! Dind!somewhere!to!release!and!recalibrate. Don’t!talk!about!it!too!soon It!is!also!important!to!remember!that!to! try!to!engage!emotionally!with!someone! shortly!after!having!a!shut!down!or!a!melt! down!(even!if!it!was!just!a!slight!shade!of! one)!can!be!problematic!?!both!for!you!and! the!person!you!are!with.! A!shut!down!or!melt!down!is!a!rejection!of! the!emotional!because!we!are!too! sensitive.! Having!AS,!we!are!too!much!of!an! emotional!being!to!start!with.! To!have!your!mother/father/!brother/ partner!jump!in!and!‘talk!about!it’!too!soon!

after!the!shut!down!or!melt!down!can! cause!further!overload,!and!you!may!Dind! yourself!sliding!straight!back!in!to!dank! hollowness.! For!some!predominant!neurotype’s! (PNT’s),!it’s!difDicult!not!to!‘talk!about!it’.! They!want!the!misunderstanding!sorted.! They!really!want!to!help.!A!partner!did! this!to!me!once.!He!was!so!keen!to!talk!the! misunderstanding!through!and!clarify!it! for!me!that!he!didn’t!realise!his!words! were!like!a!hammer!beating!on!the!inside! of!my!skull.!The!only!recourse!for!an! overloaded!system!is!to!go!numb.!I! remembered!absolutely!nothing!of!the! conversation!until!he!left!and!I!‘came!to’! standing!alone,!some!hours!later!in!the! quiet!of!my!garden.!

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Time!and!space!is!vital!to! process!the!speed!hump.! Loved!ones!need!to!know!that! someone!with!AS!needs!this! space!too.! There!is!a!point!in!examining! our!prickly!reactions!to!all!of! this!in!detail,!and!this!is!it:! Don’t!suppress!your!real!self.

Diagnosed& on& the& Au4sm& Spectrum& at& the& age& of& 35,&Alyssa&Aleksanian&is&a&primary&school&teacher&in& Sydney,&Australia. For# the# past# few# years# Alyssa# has # been# a# strong# advocate#for#listening.#As#a#primary# school#teacher,# she#makes#it#her#priority# to#listen# to#those#children# with#ASD#in#her#care,#not#just#observe.#Alyssa #says,#“I# personally# find# those# ar'cles # wri^en# from# the# 'insiders# perspec've'# as # it# were,# are# far# more# accurate#and# helpful# to# carers#and#loved#ones #than# those# constructed# from# the# observa'on# of# researchers.# All# theses# children# with# ASD# are# now# growing# up,# becoming#adults.#Let's#ask#them#what#it#is#like#being# them.#What#a#mine#of#informa'on#to#draw#and#learn# from.”#Alyssa#holds#a#Masters#degree#in#Teaching,#as# well# as# a# BA# in# Conserva'on# of# Cultural# Materials# and#a #BA#in#Visual#Arts#(“yes#6#like#most#with#AS”#she# says,“it# has # taken# me# a # while# to# figure# out# what# employment#worked#for#me.”).#

You+can+see+more+of+Alyssa’s+art+at+alyssaaleksanian.com

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Autism World Magazine Issue 22  

Because we care

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