Autism World Magazine 18

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Issue 18 / July 2014

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CONTENTS 10

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AUTISM)AND)CANCER Jess)Block)Nerren

Royce&and&his&amazing&spirit&and& resilience

36

TRAVELING)WITH)ASD Chantal)SicileDKira The&importance&of&planning&your& traveling&and&holidays.

60 ** HOW TO USE THIS CONTENTS PAGE ** CLINK/TAP pictures, numbers or text to jump straight to your chosen page.

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Publisher:

ISSUE 18 / July 2014

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© Copyright 2014 MagsWest PO Box 99 Mosman Park WA 6912

info@magswest.com

Autism World Magazine is available digitally for iPad, iPhone, Androids, PC or portable device.

Subscribe via the Apple Newsstand or Google Play Or CLICK HERE

Editor:

Iain Croft Website:

autismworld magazine.com Facebook:

facebook.com/ worldautism

03 HOW)ABOUT)THEM)APPLES Sensory(Movie(Day((by(Iain(Croft

66 HOW)ABOUT)THEM)APPLES Moving(Dreams(by(Chantal=Sicile=Kira

28 CAT’S)IN)THE)CRADLE) Dr(John(Wray

68 BUILDING)AN)INCLUSIVE)WORKFORCE Melissa(Scott

46 UNSUNG)HERO by(Iain(Croft

78 KAREN’S)AUTISM)ITEMS Karen(Davies

51 BIRTHDAY)PARTIES Jacinta(O’Connor

82 MEETING)THE)TRAIN Alyssa(Aleksanian

60 IMPROVING)VOCABULARY Catherine(Crestani(and(Diana(Wolf

Front Cover Royce

STATEMENT OF POLICY AND DISCLAIMER ‘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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Editor’s Note There have been many times since we created this magazine that I have been totally overwhelmed by the passion and resilience of those across our global autism community.

Families who against whatever odds share their stories, trials and solutions with us.

Jess Block Nerren and her son Royce have previously featured in this Magazine, sharing Royce’s love for climbing. Happy times and happy memories.

So like many who know Jess and Royce I was shocked to read that Royce had cancer and was undergoing emergency treatment.

As Jess writes in her article in this issue; “Autism and paediatric cancer.

Autism and Hodgkin’s Lymphoma. No matter how you say those two together, it sounds tough”.

And it has been tough for this beautiful family.

I am honoured that Jess and Royce have shared their autism and cancer journey with us all. I am deeply moved by their story of this turbulent journey. as I am sure you will be.

Best wishes to you all.

iain iain croft editor and publisher iain@magswest.com www.facebook.com/worldautism

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AUTISM AND CANCER Jess Block Nerren

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Autism and pediatric cancer. Autism and Hodgkin’s Lymphoma. No matter how you say those two together, it sounds tough.

My son Royce, eight, with autism was diagnosed with Hodgkin’s Lymphoma about on March 3, 2014.

We went to the hospital for back pain, and 11 hours later we were on our way to Children's Hospital LA for Lymphoma. And now here we are, completing a fivemonth cancer treatment.

It has certainly been a wild ride. We have had days far easier than expected, and ones far harder than expected. Our experience just fluctuates wildly, with virtually no notice.

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AS A MOM One day all the hair on my son's head jumped off his head from the chemo.

He lost it in less than a day, during class and during a birthday celebration for a classmate. As his hair covered a classmate’s desk, he just said, “Look, that’s my hair.” And then he casually went back to doing his classwork.

We shaved his head later that day and looked up a lot of bald jokes to tell my bald husband.

We make the effort to keep it fun and light, but hair loss is something that is hard even for fully-grown adults to go through. All of this is hard, so hard, but Royce will do better if he doesn't see us sweat. So my job is to make this huge effort as effortless as possible, so that he can get through it. And for him to still have fun and be a kid while all this goes on around him.

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One day, Royce went into an anaphylaxis allergic response and stopped breathing while receiving chemo. They said I was the calmest mom they had ever seen who had a kid stop breathing in clinic.

She jumped up, with her workstation still surrounding her and rising up with her as she leapt out of her seat.

I just notified the medical assistant doing paperwork outside our room.

As 20 or so people filled the room to give Royce the epi-pen, I began moving furniture out of the way so they could get to him with the crash kit efficiently enough to help him. The whole thing lasted a matter of seconds and he was fine.

“Excuse me but my son says he can’t breathe.”

“What?!?”

l surrounding her and rising up with her as she leapt out of her seat.

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He takes medication four times a day, most orally, but also by injection, both into his IV and into his leg just under the skin.

I administer his oral and injectable medication, though I am a publicist by trade and never touched IV supplies before in my life.

In typical Royce fashion, when I told him we would be back in clinic the next day, he just asked not to have that medication again, and upon confirmation, went back to reading the encyclopedia of baseball.

We carry the most random assortment of medical supplies with us everywhere we go.

Clamps for his central line, in case he starts bleeding out of his line. An epipen, in case he stops breathing again. A thermometer to constantly monitor his temperature. Baby wipes and hand sanitizer to maniacally ward of infection and germs because now it is literally a matter of life and death. Anti-nausea pills. Extra medication and IV supplies.

We average a trip to clinic every other day and on the days we aren't there, at least one call to the oncologist for little but really important things that come up.

It's amazing how fast you catch on when it is your kid, though not without my fair share of stumbling blocks.

I’m much better at publicising a 60,000person autism walk than serving as a de-facto nurse and much better at doing IEP’s than creating a sterile field.

But Royce and I joke about my missteps, which illustrate that nobody’s perfect.

I get bubbles out of saline injectables by shooting liquid onto the ceiling, or myself, or him, or the cat.

I accidentally stabbed my finger with a sterile needle.

Heck, I accidentally set a hamburger on fire our first week out of the hospital!

But with time, I think I've actually gotten pretty good at all these new routines in our life.

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FOR A KID It is beyond amazing to see how incredibly a child can handle a challenging situation. Royce’s strength and courage and communication and acceptance through all of this have been truly unparalleled.

His bravery and spirit keeps us going because he is so determined.

Does that sound like a cliché?

Probably, but it is worthy of mention, because it is so incredible.

Royce jumps and hops his way through the hospital on his way to the infusion clinic.

This little bald kid, with his pet ‘cow’, jumping for joy and it makes me so proud to see his strength He does his homework while waiting for anesthesia. He goes to class every day that he isn’t in the clinic.

His mantra has been, “I’m okay, and if I’m not okay, I’ll let you know.”

So we take him at his word and we go with it.

I can’t say enough amazing things about his school. They welcomed him back to class with open arms and truckloads of encouragement.

He is cleared to play at recess and plays with his friends.

His aide helps him like always, just for a couple extra things now as well.

Everyone gives him hugs and highfives.

He says he “feels better by talking with his friends”, and this camaraderie among educators and students and my son is beyond touching.

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Our thumbs up phase:

We’ve gone through our therapy dog phase:

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And our silly faces phase:

And these games, coupled with the constant companionship of Royce’s stuffed pet, ‘Cow’, help keep a non-fun experience pretty fun, through dressing changes, injections, ports, medicine and beyond.

But it isn’t always easy. It can be pretty rough too. The hardest for Royce happens to be the port he has in his leg.

He just hates wearing it, putting it in, anything. We had to really work through options for this to work and my heart goes out to him when he has no choice but to get something that he dislikes so much.

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ABOUT AUTISM AND CANCER By no means does my two-month journey make me an expert but I have seen and experienced a number of things in this short time, and can say definitively that there is very little information available about when this disease and disorder intersect. A Google search returns some early clinical genetic studies and some conspiracy theories, which aren’t very helpful when navigating the day-to-day of our current experience.

It is incredibly interesting to see the ease and challenges of each and how they relate to one another. For instance, I noticed that the cancer community is encouraging in a different way than the autism community, maybe because the disability isn’t hidden - such as when a person has hair loss. It isn’t better or worse, just different.

Royce was hugged by a 70-year-old with cancer in the grocery store while we were buying dinner. It reminded me that we can always go that extra mile for those experiencing any condition, whether it be cancer, or a mom and child experiencing a particularly brutal autism behavior. I see how much it means to overcome fear and offer encouragement and hope whenever possible.

As another example, an autism mom (and one of my favorite people on the planet!) brought me a toothbrush and kept Royce swimming in Legos during his hospital stay. Autism advocates from around the country sent Royce cards and gifts and books and letters of encouragement, which was truly incredible and helped him to feel positive and upbeat despite his challenges.

There are never enough "thank you’s" I can say for the kindness that has been demonstrated to our family during our time of need - from our friends, colleagues, clients and beyond. But it reminded me how important it is to lend support to those who need it, and never to take for granted the opportunity to help when we are feeling healthy and have a little bit extra to give.

With great friends Monica Holloway and Wills

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Another interesting difference we noticed is that cancer treatment is so incredibly organized and efficient, right from the start. For cancer, we didn’t leave the hospital until we had everything we needed to face a future with cancer treatment physically in our possession and Royce’s case managed efficiently and expediently.

It took a day for our cancer lives to be dialed in. It took six months or more for our autism lives to be dialed in, and we were lucky. Having treatment available so quickly was new to us, and was actually a calming and reassuring part of our experience. There was no struggle between parents and doctors and the course of treatment began immediately upon diagnosis. WOW! We also noticed that life goes on and childhood goes on, even in the face of any challenge. While under treatment we hiked, climbed, did egg hunts, watched sporting matches, learned how to pitch a baseball, flew kites and more.

These activities helped us have fun and appreciate the limited time outside of the hospital. We spent time celebrating our successes rather than lamenting our challenges and that turned this into not just a time we will always remember, but a time we will also treasure.

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The other thing that deserves mention is how much ABA has helped us through this experience. It turns out that the same techniques that help my rigid and aggressive child with autism cope with daily life, also help him cope with extreme situations like a very intensive cancer treatment, biopsies, surgery and more. The same drill that promoted flexibility in home or school during a minor change in routine translates really well to complicated and uncomfortable dressing changes, unknown cancer treatments and more. His developmental pediatrician and all the nurses at the infusion center have complimented his adaptability and compliance, saying that it is beyond his years. I think some of this relates directly back to his past five years of ABA, which has helped to really drive home tools and coping and calming strategies that apply in any situation, including chemo!

There have definitely been times where the comorbid conditions of autism and cancer have been very relevant to Royce’s treatment and care. He can’t answer questions about his experience very well at times, though he uses advanced language, which is part of his challenges with communication. We have to help him share his pain levels accurately. He doesn't always like to play games or be distracted the same way as other kids. He needs to be prompted more frequently than other kids his age.

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And that is just part of his journey.

CLOSING WORDS

Our existing relationships with those who can help him with his autism have helped us navigate this in a way that was tailored to his needs and strengths and challenges.

While nobody really knows how any part of treatment is going to go for Royce, because cancer and chemo is different for everyone all the time, we are certainly thankful to the interdisciplinary teams at Children’s Hospital LA for helping us to navigate this complicated process efficiently and thankful to all our friends at Autism Speaks Southern California and the broader autism community for their encouragement and support.

I talked with a lady who lost her son after an eight-month battle with pediatric Hodgkin’s, and she told me, "when he feels good, you help him have any experience he feels up to having. That time is precious" - and I agree! Our lives and our perspective have been forever changed by this journey and for everyone who has been by our side along the way.

For helping us to help Royce enjoy the days he is feeling good, we say a huge “thank you!” And since today is a day Royce is feeling good, I have to get back to helping him have a fun experience!

Thank you for reading.

Love, Jess, Royce and Dylan.

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Jess Block Nerren is a publicist and mother, living in Southern California with her son, Royce, and husband, Dylan. Jess is Publicist and President of Felten Media Services, a boutique public relations shop that donates between 15%-20% of the shop's efforts to support Autism Speaks and other autismrelated community initiatives. An avid supporter of autism educational and health rights, Jess is publicist to a bestselling autism author Monica Holloway, Communications Chair of Walk Now for Autism Speaks Southern California, sits on the Children's Hospital Autism Treatment Network Parent Advisory Board, was a founding Board Member to Project Miracles, and is a Board Member-at-Large for the Riverside County SELPA, the largest special education local plan area in the state of California serving over 25,000 special education students.Â

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Photographs in this article courtesy of Emily Kye and Jess Block Nerren

CLICK HERE To support the Children’s Hospital Los Angeles

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CAT’S&IN&THE&CRADLE DR JOHN WRAY

http://youtu.be/etundhQa724 http://youtu.be/etundhQa724 http://youtu.be/etundhQa724 http://youtu.be/etundhQa724 http://youtu.be/etundhQa724 http://youtu.be/etundhQa724 CLICK ON PICTURE ABOVE WHEN ONLINE

TO VIEW VIDEO Have you ever watched or listened to this song,Cat’s in the Cradle,

by Harry Chapin and felt some connection...? As our good friend Dr John Wray explains the song has great meaning to the autism community

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We#are#all#somewhere#on#this#grand# spectrum#of#social#skills#and#interests,# communica7on#ability#and#we#all#have#a# great#range#of#interests.#Individuals#with# an#au7sm#spectrum#disorder#are# considered#to#have#significant#impairment# as#a#result#of#the#degree#of#difference.#But# let#us#immediately#acknowledge#the# importance#of# diversity#and# especially#of# interests.# Albert# Einstein# certainly# considered# himself#a# loner,#but#he# greatly#valued# truth#and# beauty,#and# to#quote#him:# “Although#I# am#a#typical# loner#in#my# daily#life,#my#awareness#of#belonging#to# the#invisible#community#of#those#who# strive#for#truth,#beauty,#and#jus7ce#has# prevented#me#from#feelings#of#isola7on.” #I#oGen#wonder,#as#I#am#observing#a#child# with#au7sm,#engaging#in#zoningIout# behaviour#or#just#staring,#or#just#listening# or#just#humming#and#smiling#–#what# elements#of#beauty#does#this#child#see,# that#I#am#missing?#What#shall#I#learn#from# this#child?

The#song#by#Harry#Chapin,#Cat’s#in#the# Cradle,#is#40#years#old#this#year.#At#the# 7me,#in#1974,#it#went#to#Number#1#on#the# US#na7onal#billboard,#and#became# Chapin’s#signature#song,#although#he#had# a#lot#of#other#great#songs.# Curiously,#the#song#was#originally#a#poem# penned#by#his#wife.#The#song#and#its# meaning#has# been#covered# by#many# ar7sts,#and# appeared#in# many#shows,# including#the# Simpsons,# Friends#and# American# Guy.# It’s#a# haun7ng#and# sad#song,#and# is#essen7ally# about#an# uninvolved#father#and#his#son,#who#wants# to#play#with#his#father.#The#father#doesn’t# respond,#un7l#it’s#too#late#–#the#boy#is# grown#up,#and#the#father#wants#to#be# involved,#but#the#son#has#learnt#his# father’s#paZerns,#“he’d#grown#up#just#like# me”,#sings#Chapin,#and#the#father#and#son# do#not#improve#their#rela7onship.# There#are#many#lessons#in#the#song.# Paediatricians,#psychologists,#therapists# and#teachers#and#anyone#involved#in# paren7ng#and#child#development#love#this# song…

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http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 Now,#I#don’t#want#to#dwell#on#the#father/ http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 son#thing,#but#instead,#let’s#extend#the# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 song#meaning#to#see#that#the#father#is# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 really#“society”#or#our#“community”,#and# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 the#child#is#really#any#child#–#that#is,#we# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 extend#the#no7on#of#shared#or#communal# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 paren7ng#–#that#children#should#be#cared# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 for#and#nurtured#by#our#community#and# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 society,#primarily#by#their#parents# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 certainly,#but#not#just#their#parents.#http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 Civilised#socie7es#demonstrate#this#http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 principle,#in#services#such#as#health#care,# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 educa7on,#disability#and#child#protec7on.# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 There#are#problems#and#things#to# http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 improve,#but#imagine#if#parents#and#http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814 families#were#completely#on#their#own.# No#doubt,#parents#oGen#feel#alone,#and# this#is#the#challenge#to#our#society#–#how# Touching,#humorous#and#insighdul,#this# can#we#monitor#and#overcome#loneliness# book#evokes#the#difficul7es#and#joys#of# and#despair.# raising#a#child#who#is#different#and#leaves# Cat’s#in#the#Cradle#reminds#us#that#we#are# the#reader#with#a#sense#of#the#dignity,# the#cradle,#we#are#the#nurturers,#the# individuality#and#poten7al#of#people#with# protectors,#and#the#promoters#of#children# AS.” and#their#place#in#our#society,#and#the#Cat;# Back#to#the#song,#which#begins,#“a#child# that’s#a#child#with#an#Au7sm#Spectrum# arrived#just#the#other#day…”#–#thank#our# Disorder#–#say’s#so#in#the#book,##“All#Cats# predecessors#and#our#civilised#society#for# have#Asperger#Syndrome”#by#Kathy# healthcare#that#keeps#mums#and#babies# Hoopmann.#The#Amazon#blurb#for#this# alive#today,#compared#to#the#tragic# book#says,#““All#Cats#Have#Asperger# sta7s7cs#of#the#past.# Syndrome”#takes#a#playful#look#at# Asperger#Syndrome#(AS),#drawing# Pause#and#remember#that#joy#and# inspira7on#from#the#feline#world#in#a#way# uncondi7onal#love#of#cradling#your#baby.# that#will#strike#a#chord#with#all#those#who# Think#of#the#passionate#advocates#who# are#familiar#with#AS.#Delighdul#colour# kept#and#keep#healthcare#standards#high# photographs#of#cats#bring#to#life#familiar# in#our#society,#and#think#of#and#thank#our# characteris7cs#such#as#sensi7ve#hearing,# bureaucrats#and#poli7cal#representa7ves,# scampering#at#the#first#sign#of#being# who,#in#the#end,#try#to#do#the#best#with# stroked#and#par7cular#ea7ng#habits.# the#resources.#

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shaZering# confirma7on#of# diagnosis,#of#blood# tests#and#medical# jargon,#of#the# confusion#of# choosing#early# interven7on# therapists,#of# daring#a#sense#of# hope#forever#7nged# with#grief.#

Spare#a#thought#for#thirdIworld#countries# and#na7ons#in#turmoil,#for#whom# healthcare#is#a#fragile#and#poor#thing.# Wonder#at#the#rigour#of#scien7fic#au7sm# research,#which#is#unravelling#the# complexi7es#of#the#gene7c#and#the# intrauterine#and#environmental#influences# that#shape#early#brain#development.# The#song#con7nues,#“He#learnt#to#walk# while#I#was#away,#and#he#was#talking# before#I#knew#it,#and#as#he#grew,#he’d#say,# “you#know#I’m#going#to#be#like#you,#Dad…”# For#many#parents#who#have#a#child#with# au7sm,#this#early#developmental#period# when#your#child#is#not#7cking#the# developmental#milestones,#is#a#7me#of# alarm#bells,#of#worry,#of#denial,#of#waitI lists#and#appointments,#of#wellImeaning# advice,#of#different#opinions,#of#earthI

But#thankfully,#a# civilised#society#has# early#interven7on# services#and# dedicated#therapists#and#at#least#some# funding.# Thankfully,#there#is#great#research# proceeding#worldwide,#and#right#here#in# Western#Australia,#that#is#exploring#the# rising#prevalence#of#au7sm,#and#the#best# way#to#iden7fy#the#early#signs#of#au7sm,# and#to#deliver#therapy,#the#best#7ming,# the#best#technology.# There#are#several#rare#singleIgene# disorders#that#are#associated#with#au7sm# –#Tuberous#Sclerosis,#Fragile#X,#Angelman# Syndrome,#where#research#has# progressed#to#the#stage#of#human#drug# trials,#and#animal#models#of#these# disorders#show#great#promise#in# understanding#the#mechanisms#of#au7sm.#

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There#have#been#many#clinical#trials#also# in#children#with#au7sm#–#none#of#them#yet# with#great#results,#but#much#has#been# learnt.# Later,#of#course,#a#child#with#au7sm#will# have#to#nego7ate#school,#and#this#is#a# 7me#of#great#stress#for#children#and#their# parents.#By#this#stage,#children#with# au7sm#have#started#to#more#clearly# diverge#into#those#with#poor#or#no#spoken# language,#and#those#with#some,#a#lot,#or# even#advanced#spoken#language.# By#this#stage,#a#great#diversity#of#interests# and#repe77ve#behaviours#are#unfolding#in# the#au7sm#spectrum#–#from#oral# s7mula7on#through#to#planetary#systems.# By#this#stage#a#great#diversity#of#social# skills#are#unfolding#in#the#spectrum#–#from# aloofness,#to#shyness,#to#selec7ve# friendships.#Children#with#au7sm#may#

suffer#ostracism,#bullying#and#teasing# during#this#phase.# They#may#have#various#academic# difficul7es,#and#parts#of#the#curriculum# will#drive#them#and#their#parents#crazy.# Although#there#are#difficul7es#in#mee7ng# the#needs#of#all#children#with#au7sm#in# our#schools,#we#should#be#thankful# whenever#we#encounter#flexibility,# kindness,#tolerance#and#exper7se.#There# is#great#work#ongoing#to#explore#ways#to# support#children#in#school#with#their# weaknesses,#as#well#as#to#understand#and# nurture#their#strengths#and#interests.# The#great#Bri7sh#ar7st,#Stephen#Wiltshire,# famous#for#his#visual#memory#and# reproduc7on#of#cityscapes,#aZended#a# flexible#school#for#children#with#au7sm,# where#his#great#talent#was#recognised#and# fostered.#

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With#support,#Stephen#Wiltshire,#now# has#his#own#profitable#studio#and#has# appeared#in#numerous#documentaries.# We#will#help#our#schools#to#improve# flexibility#and#services,#by#being#ac7vely# involved#in#our#own#school,#as#well#as#in# broad#advocacy.# I#love#the#diversity#of#interests#and# eccentrici7es#of#folk#on#the#spectrum,# and#I#honour#the#flexibility#and#extremes# that#some#families#undertake#to#help# with#these#interests.#I#remember#the# story#one#family#told#me,#of#how#their# son,#let’s#call#him#Jonny,#was#extremely# interested#in#all#things#to#do#with#traffic# control#–#signs,#lights,#barriers.# One#day,#while#visi7ng#friends,#the# parents#no7ced#their#child#had#gone# missing#–#imagine#the#concern#–#the# whole#household#was#mobilised#looking# for#the#child,#they#were#probably#on#the# verge#of#calling#the#police,#when#the# child#was#found#in#the#backyard#of#the# neighbour.# The#neighbour#was#a#road#worker,#and#in# the#backyard,#happened#to#have#a# railwayIcrossing#boom#gate.#Jonny#sat#in# the#yard#staring,#mesmerised#at#the#boom# gate.#The#family#couldn’t#get#him#to#leave.# They#nego7ated#a#price#for#the#boom# gate,#and#strapped#it#to#the#roof#of#the#car# and#brought#it#home#to#their#own# backyard.#“Wow”,#I#said,#“so#now#you# have#a#boom#gate#in#your#backyard?”# “Yes”,#said#dad,#rather#sheepishly,#“the# boom#gate#is#right#next#to#the#set#of#traffic# lights”.

As#the#child#with#au7sm#con7nues#to# proceed#through#school#and#into#young# adulthood#they#will#face#many#other# challenges.# Challenges#that#we#all#face,#but#a#child# with#au7sm#has#fewer#resources#to#deal# with#the#challenges#of#emerging#sexuality# and#recrea7onal#and#voca7onal#needs,# and#poten7al#for#independent#living.#

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There#are#organisa7ons#and#professionals# that#assist#in#this#phase,#although#it#seems# that#need#outstrips#the#response.#We# must#con7nue#to#plan#and#advocate#for# services#and#assist#and#thank#exis7ng# services#and#carers.#

Life#is#a#puzzle#and#an#extraordinary# journey.#

At#each#of#the#stumbling#blocks,#the# family#will#be#reminded#of#their#grief#–# their#sense#of#loss,#and#worry#for#their# child,#whose#adulthood#may#not#be# typical.#Their#child#may#not#be#on#the# same#trajectory#as#the#young#adult# children#of#their#friends#and#other#family# members.#

You#have#been#touched#by#and#shaped#by# au7sm.#You#might#have#had#a#life#touched# by#another#disability,#or#by#other# experiences.#

A#mature#and#inclusive#society#recognises# our#differences#in#abili7es#and#aspira7ons# and#supports#programs#that#encourage# ability.#Research#endeavours#in#this#area# are#diverse,#and#include#examina7on#of# the#best#social#and#voca7onal#programs,# and#the#u7lisa7on#of#assis7ve#technology.#

There#will#always#be#many#challenges#in# life#and#for#our#community.#There#will#be# good#7mes#and#bad#7mes.#

You#might#have#had#a#life#where# difference#and#disability#did#not#feature# strongly.#I#am#sure#that#lives#that#have# been#shaped#by#our#caring#and#loving# ins7ncts#are#worthy#and#fulfilling#lives,# albeit#some7mes,#7ring.# Celebrate#your#cradling.#Celebrate#our# societal#cradling.#Look#for#ways#to#support# and#strengthen#the#cradle.#

Dr John Wray is a senior Developmental Paediatrician in Perth, Western Australia.

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Chantal Sicile-Kira

Traveling&as&a&Family

My husband and I have relatives spread out over two continents and we love traveling and we hoped to continue to do so – budget permitting – once we had children.

Traveling can be trying even at the best of times when you have small children, and traveling with a child or teenager on the autism spectrum can be even more of a challenge.

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While Jeremy (our son on the spectrum) was still a baby or even a toddler, traveling with him was easy.

A family that Jet ski’s together...

But as he got older it became more and more difficult, even though he enjoyed the end result of being with family and friends.

Over time, we found or developed strategies to help us continue to travel as a family, and I shared them in my book, Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism.

How you prepare your child or teenager for travelling depends on his age and how the ASD affects him.

Some suggestions are given here that you can adapt for your own child’s needs and level of ability.

Remember that the first time you use these strategies, he or she may not understand, but over time, they will.

Teach the skill of waiting.

Travel can involve lots of waiting: waiting in line at airports or train stations, or waiting to for a certain amount of time or mileage to go by before stopping the car for a break.

Therefore, I recommend teaching your child the “waiting” skill if he does not have it.

Not only will learning the concept of waiting (“you will get what you want eventually”) help with traveling, it is a necessary life skill for every day life.

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CLICK ON PICTURE BELOW WHEN ONLINE TO

WATCH CHANTAL’S VIDEO

http://youtu.be/7WiRhLsZTtw http://youtu.be/7WiRhLsZTtw http://youtu.be/7WiRhLsZTtw http://youtu.be/7WiRhLsZTtw http://youtu.be/7WiRhLsZTtw http://youtu.be/7WiRhLsZTtw Teaching the Skill of Waiting: Autism Parenting Tip from Autism College.

Here is how to teach the skill: Make or find a picture that will represent “waiting” to your child. We have used a simple line drawing of a person sitting in a chair, with the face of a clock next to it.

Next, make sure you have pictures of whatever items your child usually requests or wants immediately (favorite food, toy, ride in the car), backed with Velcro, and a seconds timer.

Write “waiting” clearly on the card. Laminate the picture and place a piece of Velcro somewhere on it.

The next time he requests an item put the relevant picture on the Velcro on the waiting card.

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Then turn the timer on for a few seconds. Say, “We are waiting” or “Waiting” and point to the card.

When the timer goes off, immediately fulfill his request.

Some children need to start with a wait of only three seconds, and work on up from there. Some can start at ten seconds or more.

Once your child has learned to wait for those few seconds, add more. You know your child, so you will have to gauge where to start. Eventually, he will understand that he will get what he wants, it is only a matter of time.

Put up a monthly calendar and check off each day until it is time to go. Bring the calendar with you and mark off the number of days in the new place, always having the departure date indicated.

Put together a “travel book.” In pictures and/or words, show the means of transport you are going to be using to travel (airplane, boat, train); who you are going to see (relatives, friends); where you will sleep (hotel, Grandma’s house); and what you will do or see at your destination (swimming, playing outside, visiting monuments).

Go over this with him or her as often as you like in preparation for the trip. If your child prefers an actual book, a three-ring binder works best, because you can add extra pages or insert the calendar mentioned above for use on the trip.

For those who have access to an iPad or tablet, there are apps that can help you create schedules and books on your tablet.

Put together a picture or word schedule of the actual journey to take with you on your trip. Add extra pages to the travel book. If you are using a binder, use Velcro to attach pictures or words in sequence. Add an empty envelope to put the “done” pictures in when you have finished that step of the journey.

For example, if you are flying to another city, start with a picture of the taxi or car that will take you to the airport.

When you are at the airport, have him remove the taxi picture and put it in the envelope. Then have a picture of the airport, followed by the “waiting” picture, and then the airplane, and so on.

Think of your child’s daily routine and the items he likes or needs for it.

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Bring those items along to make her feel more at home.

Bring whatever foods and drinks will keep him happy on the trip.

It can be a bit disconcerting for everyone concerned if your older child takes his clothes off and races through a friend’s house stark naked.

Buy some small inexpensive toys that he can play with. If she only plays with one favorite item, try to find a duplicate and see if you can “break it in” before the trip.

Make sure your child has an ID tag attached to him or her somewhere, with current phone number and “autism” written on it.

Do not wash any toys before you go, as your child may find comfort in the “home” smell of his cherished item.

You can order medical bracelets, necklaces, and tags to attach to shoelaces.

When staying in a hotel, it is a good idea to call ahead and ask for a quiet room. You may wish to explain about your child’s behavior if there is a good likelihood of him exhibiting it in the public part of the hotel.

The same with a friend or relative’s home.

If you can persuade your child to keep it in his pocket, also make an ID card with current photo and date, plus home and mobile phone numbers and the number of where you are staying.

Indicate that your child has autism.

Be sure to add any other important details: allergies, medications, and any specific information—for instance,

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Artwork: by Jeremy Sicile-Kira www.jeremysvision.com

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Chantal Sicile-Kira is an award-winning author, advocate and speaker on autism. She is the founder of AutismCollege.com, which provides practical information to parents and educators.

The author of six books, Chantal writes regularly for Autism World Magazine.

We#are#also#really#excited#that,#at#the# invitation#of#Autism#World#Magazine# and##Autism#West,#Chantal#will#be# coming#to#Australia#in#October#and# November.#Watch#this#space#for# more#information# Click on the book picture to order “A Full Life With Autism”.

Chantal’s other books: Autism Spectrum Disorders; Adolescents on the Autism Spectrum; Autism Life Skills; What is Autism?

Understanding Life with Autism or Asperger's. and her newest title the revised edition of Autism Spectrum Disorders. The new title is: Autism Spectrum Disorder: The Complete Guide To Understanding Autism (US edition, Penguin, January 2014

http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/

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sensorymovieday@hotmail.com

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http://www.autismwest.org.au http://www.autismwest.org.au http:// www.autismwest.org.au http:// www.autismwest.org.au http:// www.autismwest.org.au http:// www.autismwest.org.au http:// www.autismwest.org.au http://

Become a Full or Professional Member of Autism West and, on top of our fantastic Centre, Support and Resources, get the Digital Edition of Autism World Magazine FREE each month.

For iPad, iPhone, PCs, Desktop and all portable devices.

You get so much more with Autism West.

Autism West offers the following Membership Options:

Full)Membership $25)per/annum • • • • • • •

Access&to&Argonaut&Autism& Resource&Centre&at&Autism&West Can&request&items&for&us&to& purchase&using&our&funding&from& Argonaut&Limited Electronic/email&Autism&West& updates Family&Advocacy&support Free&family&entry&to&the&end&of&year& party 10%&discount&on&Autism&West& workshops&and&conferences 12&month&subscription&to&the&Digital& Edition&of&Autism&World&Magazine.

Professional)Membership $50)per/annum • Access&to&Argonaut&Autism&Resource& Centre&at&Autism&West • Can&request&items&for&us&to&purchase& using&our&funding&from&Argonaut& Limited • Electronic/email&Autism&West& updates • Family&Advocacy&support • Free&family&entry&to&the&end&of&year& party • 10%&discount&on&Autism&West& workshops&and&conferences • 12&month&subscription&to&the&Digital& Edition&of&Autism&World&Magazine • Invitation&to&professional&events& hosted&by&Autism&West • Hire&our&rooms&at&Autism&West&at&a& discounted&rate • Access&to&a&TOBY&Consultant • Professional&updates&about&Autism& Resources

Au#sm&West&Support&Inc&&&&&&&&|&&&&www.au#smwest.org.au 41&Broadway&Nedlands&WA&6009&&&&|&&&PO&Box&666,&Nedlands&WA&6009 Tel:&08&6389&1833&&&|&&&Fax:&08&6389&2600&&|&&&Mobile:&0414167345 Autism World Magazine - 45

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Unsung Hero - Royce

by Iain Croft In a magazine dedicated to a young man in Los Angeles, with autism and Hodgkin’s Lymphoma, eight-year-old Royce is our champion and hero!

CLICK HERE TO NOMINATE YOUR UNSUNG HERO

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Autism World Magazine - 47

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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 - 48

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Autism W rld Magazine

Then please spare a few moments to write a review about us on iOS or Google Play CLICK HERE TO REVIEW

Autism World Magazine - 49

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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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GAPS% Birthday% Par.es!

Jacinta&O’Connor& Jacinta O’Connor Nutritionist Naturopath Certified GAPS Practitioner MINDD Practitioner Additive Alert Presenter Kardinya, Western Australia

The&thought&of&preparing&for&a&child’s&birthday&party&can&be&a&liEle&daunFng& when&following&the&GAPS&Protocol.&What&do&you&feed&those&hungry&liEle& munchkins&who&are&used&to&wading&their&way&through&chips,&cheezels,&sausage& rolls,&fairy&bread&and&mulF&coloured&lollies&that&adorn&most&party&food&tables?

Then&it’s&Fme&for&games&with&prizes,&the&cake&and&finally&…..&lolly&bags.&Lolly&bags& without&lollies???

Some&suggesFons&below&may&help&with&your&preparaFon&and&planning!

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Food&SuggesFons& Chicken&tenders&coated&with&a&combinaFon&of&almond&meal&and&parmesan& cheese.&A&honey&mustard&dipping&sauce.

Muffins&made&with&coconut&flour&or&nut/seed&flour.& Dips&made&with&a&base&of&crème&fraiche&(sour&cream),&kefir&or&yogurt&cheese.&You& could&add&garlic&and&spring&onion,&fermented&roasted&red&peppers&or&roasted& tomatoes.&Guacamole&is&always&a&hit&using&the&GAPS&crème&fraiche,&avocado,&red& onion,&garlic&and&lemon&juice.&Dipping&sFcks&of&fresh&vegetables.

Meatballs&on&toothpicks&with&slow&roasted&tomatoes,&basil&and&garlic&whizzied&up& for&a&dipping&sauce.

Mini&pizzas,&made&with&a&base&of&coconut&flour&and&almond&flour&and&topped&with& home\&made&roasted&tomato&sauce,&cheese,&pineapple,&naturally&smoked&bacon& and&basil.

Macaroons&–&Chocolate&or&lemon&vanilla.

At&the&end&of&party&–&a&fresh&fruit&plaEer&to&tempt&the&partygoers,&exhausted&a_er& the&games!

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Prizes&for&Games& Pens&and&pencils Fancy&erasers& BeauFful&beeswax&crayons Wands&and&crystals Modelling&wax Candles Yo\yos hair&clips&or&bands Toy&cars

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The&Cake Icing&the&Cake!

There&are&a&few&icing&recipes&that&are& GAPS&friendly.&One&of&them,&adapted& from&the&book&“Against&All&Grains”&is&as& follows:\

Ingredients ¾&cup&buEer/ghee/&palm&shortening 400gm&can&of&coconut&milk&or&coconut&cream,&refrigerated&overnight ½&cup&honey 3&tsp&coconut&flour,&si_ed 1&tsp&vanilla&extract

Method Gently&remove&the&can&of&coconut&milk&and&scoop&off&½&cup&of&the&cold&cream& that&has&risen&and&solidified&at&the&top&of&the&can.&Using&electric&beaters,&beat& the&buEer&or&ghee&on&medium&high&unFl&thick.&This&should&take&around&5& minutes.

Add&the&honey,&coconut&flour&and&vanilla&and&beat&again&unFl&incorporated.& Refrigerate&for&20&minutes&before&spreading&or&piping&onto&cooled&cakes,& cookies&or&cupcakes.& A&great&way&to&involve&all&the&family&in&the&birthday&preparaFons&is&working& out&ways&to&colour&the&icing&for&the&cake.&Juice&some&spinach&for&the&green& colour,&some&beets&for&a&beauFful&pink,&blueberries&for&mauve&and&carrots&for& orange.&You&can&use&spices&for&some&colouring,&such&as&turmeric&for&yellow.&

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“This&amazing&birthday&cake&was&made&by&one&of&our&GAPS& Support&Group&members,&Miriam,&for&her&daughter’s&birthday.& The&icing&and&the&cake&were&dairy&free&and&the&triangles&on&the& castle&were&special&egg\free&cake&for&her&son.”

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SFcky&Date&Birthday&Cake& Recipe Ingredients 200g&piEed&dates 80ml&(1/3&cup)&boiling&water 80g&buEer/ghee&so_ened 150g&raw&honey&(1/2&cup) 3&eggs 80g&yogurt/kefir/almond&milk&(1/3&&cup)& 250g&organic&almond&flour&(2&½&&cups) 1&½&teaspoons&of&pure& bicarbonate&of&soda

Method Preheat&oven&to&150C Line&a&20cm/8&inch&square&Fn& with&baking&paper.& Place&the&dates&and&boiled& water&in&the&food&processor&and& process&unFl&dates&are& chopped.&Set&the&date&and& water&mixture&aside&in&a&large& bowl.

In&another&bowl,&mix&the&honey& and&buEer&unFl&creamy.

Add&the&eggs&gradually&and&beat&well.

Pour&this&mixture&into&the&chopped&dates.&Add&yogurt&and&blend.

Mix&the&almond&flour&and&bicarbonate&of&soda&together&and&combine&with&the& date&mixture.

Pour&the&mixture&into&the&cake&Fn&and&bake&for&60&minutes&or&unFl&the&cake& feels&spongy.&

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GAPS&Friendly&Chocolate&Cake Ingredients 3&pastured&eggs ¾&cup&almond&buEer& 1/3&cup&melted&coconut&oil/buEer/ghee 1/3&cup&honey ¼&cup&pure&cacao&or&cocoa&powder& ¼&cup&almond&flour ½&tsp&baking&soda& ¼&tsp&pure&sea&salt 2&tsp&pure&vanilla&extract

DirecFons Melt&coconut&oil&in&pan&on&low&heat.

Whisk&all&of&the&dry&ingredients&together&\&almond&flour,&bicarb&soda,& sea&salt&and&cacao&powder.

Once&coconut&oil&has&melted,&remove&from&heat&and&add&honey,&sFrring& unFl&honey&gets&melty.

Whip&eggs&in&mixer&unFl&light&and&fluffy.&Mix&in&vanilla,&then&almond& buEer&and&coconut&oil/honey&mixture.& Mix&dry&ingredient&mixture&into&wet&mixture.

Grease&20cm&x&20cm&pan&with&addiFonal&coconut&oil.&Spread&into&pan& and&bake&at&350C&for&25\30&minutes&or&unFl&toothpick&comes&out&clean.

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Rename&the&lolly&bag,&‘The&Party&Bag’ Packets&of&flower&seeds&or&vegetable&seeds&to&plant&in&the&garden&when& they&get&home.

A&punnet&of&seedlings.

A&juicy&ripe&mango&–&when&in& season.

MulF\coloured&balls&of&play&dough.

Groovy&shaped&cookie&cuEers&with& a&GAPS&Friendly&biscuit&recipe& included.

A&small&cra_&acFvity Some&jokes& Balloons&and&whistles& Modelling&clay& Delicious&bliss&balls&made& from&nuts,&dried&fruit&and& honey.&Include&the&recipe&to& inspire&others.

Hand\made&fun&Fckets&to&a& play\date&at&the&park&or&a& sleepover.

Enjoy&your&nourishing&GAPS&Friendly&birthday&party!

Jacinta

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Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and Nedlands, Western Australia nutritionmatters@ozemail.com.au

GAPS™ is the registered trademark

of Dr Natasha Campbell-McBride.

Each month in Autism World Magazine Jacinta O’Connor takes you through some of the practical steps to help GAPS work for you and your family.

And if you are using GAPS send us an email and let us know how you are going. support@magswest.com

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Improving Vocabulary with Catherine Crestani and Diana Wolf

Children&with&ASD&vary&in&terms&of&their&ability&to&understand&and&use&new& vocabulary.&Some&children&find&it&difficult&to&transfer&from&using&poinFng&and& grunFng&to&using&words&when&communicaFng&with&others.&Other&children&will&get& stuck&on&using&the&same&types&of&words.& There&are&two&types&of&vocabulary&development.&Firstly&recepFve&vocabulary&is& how&well&a&child&understands&the&meaning&of&what&is&said&to&them.&For&example,& ‘dog’&is&an&animal&with&four&legs&that&barks,&not&all&animals&with&four&legs.&The&other& type&of&vocabulary&is&expressive&which&is&how&well&a&child&can&say&words&they&have& learnt.&This&includes&using&them&correctly&in&context.&It&is&ok&if&the&word&is& mispronounced.&

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Some&strategies&and/or&games&to&try&with&your&children& below&to&assist&in&improving&their&vocabulary.

Use&sign&and/or&visuals&to&pair&with&a&word&to&help&consolidate&their& understanding.

Get&your&child&to&point&out&different&pictures&in&books&to&help&build&their& understanding,&whilst&also&gesng&them&to&aEempt&the&word.& Do&not&give&your&child&something&they&point&to&or&gesture&to&straight& away.&Wait&for&your&child&to&try&and&say&the&word.

Use&short&simple&sentences,&to&help&your&child&understand&and&have&a& model&to&copy.

Add&on&to&what&your&child&says.&For&example,&if&your&child&says&‘go&now’& you&might&say&‘We&are&going&now’.& Offer&a&choice&quesFon.&Give&your&child&an&opFon&of&two&possible& alternaFves&to&gesture&what&they&want.&For&example,&‘Do&you&want&milk& or&juice?’.& Correct&your&child&when&they&use&the&wrong&word.&For&example,&if&your& child&says&‘dog’&for&‘cat’,&you&could&say&‘it’s&a&cat,&it&goes&meow,&it’s&a& cat’.& Use&intonaFon&(stress&or&sing\song&voice)&when&saying&a&new&word&to& make&it&interesFng.& Repeat&the&word&several&Fmes&and&make&it&a&theme.& For&children&who&use&the&same&words,&pair&the&old&word&with&a&new& similar&word.&For&example,&if&your&child&always&says&‘big’&you&could& introduce&‘small’,&‘liEle’&or&similar&words&such&as&‘huge’,&‘giganFc’.& Choose&books&with&new&topics&that&your&child&might&not&be&familiar&with& (e.g.&submarines,&space&travel,&donkeys).& When&reading&books,&do&not&sFck&to&the&wriEen&text.&Replace&difficult& words&with&similar&words&that&are&more&appropriate&for&your&child&(e.g.& humongous&with&large).&

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Remember&make&it&posiFve&and&fun!

Catherine&&&Diana Catherine Crestani and Diana Wolf are Principal Speech Pathologists at Nepean Speech and Language Services, in Penrith NSW, Australia. Diana has more than 21 years of experience and continues to thrive on learning new ways to provide intervention to children. Catherine’s passion is for early intervention, including supporting children with ASD. %% www.nsls.com.au

Next%month%we%will% bring%you%our%Tips% for%improving% following%direc.ons

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VISUAL COMMUNICATION AIDS AND RESOURCES Non or Semi Verbal child or adult?

Our good friends Heidi Heeman and Jacqui Little from the Resources for Special Needs Facebook Group have created this wonderful booklet to make life easier.

It's all about Visual Communication, Ideas, Websites/links, Schedules, Product info, FREE downloads for PCS/PECS etc.

TO DOWNLOAD THIS FREE BOOKLET FROM THE AUTISM WORLD MAGAZINE WEBSITE SIMPLY CLICK HERE Please feel free to share around.

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ABOUT THEM APPLES Chantal Sicile-Kira .

Today is a momentous day in the Sicile-Kira household. Jeremy Sicile-Kira picks up the keys to his new apartment. I don't know whose smile is wider - Jeremy's or mom and dad's. Never give up on your dream!

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18 + 1

What happens to your child once they turn 18? This is the question troubling many families.

Autism World Magazine hopes to answer some of your

68

Building an Inclusive Workforce

by Melissa Scott The CRC, Connecting employers with people with Autism.

concerns in our 18 PLUS Section.

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Building&an&Inclusive&Workforce& ConnecFng&employers&with&people&with&AuFsm Melissa Scott

For$many$adults$with$Au2sm$Spectrum$Disorder$naviga2ng$the$pathway$to$ employment$can$be$challenging$and$o;en$disappoin2ng.$The$focus$of$ ‘successful’$employment$is$o;en$placed$on$how$adults$with$ASD$need$to$be$ trained$and$coached$to$become$a$part$of$the$workforce.$This$can$place$a$lot$of$ responsibility$on$the$adults$with$ASD$and$their$employment$providers$to$fit$into$ a$specific$work$culture.$However,$this$has$been$recognised$as$only$one$side$of$ ‘successful’$employment$and$new$research$is$looking$into$how$the$employer$ can$assist$in$building$an$inclusive$workplace.

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Milestones in becoming an adult Transition into adulthood is both exciting and challenging. It is a time when young adults begin to develop their identity separate to that of their parents. This period of transition is often characterised by changes in all life areas such as relationships, living situations and employment.

Employment is an important milestone to achieve. It is recognised by both society and peers as a landmark in becoming an adult. Work is often seen as more than just a place where money is earned.

Work offers people a sense of accomplishment, provides structure, creates opportunities for socialisation and generally involves people in society. Works can form a large part of anyone’s identity. Despite many adults with ASD having the skills and abilities to work many have difficulties in securing and maintaining meaningful employment. More often than not the obstacles to employment for adults with ASD include social, communication and behavioural difficulties rather than their actual job performance.

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Strategies for employment For the adults with ASD who are successfully employed, various vocational supports and strategies have helped them to maintain employment.

Such strategies for employment included: counselling, training, coaching and advocacy by support services.

Counselling and guidance included communication with coworker relationships and social interactions.

Training was aimed at managing specific behaviours.

Coaching helped prepare for job interviews and on-the-job training to increase work independence.

These strategies assisted in over 50% job retention rate over a one year period for adults with ASD. Although, these results are encouraging these strategies all require the adult with ASD to make the changes in order to fit into the workplace.

Successful employment involves more than just the person adapting to fit into the work environment. It also involves the work environment adapting to fit the person.

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Adapting the work environment for success Employers are seen to play a key role in assisting successful employment outcomes for adults with ASD.

This might also include an employer who is willing to provide education and training to their staff about ASD.

This can be achieved through flexibility in adapting the work environment and the willingness to make job modifications. This might include working in a quiet environment or maintaining consistent routines at work.

This will help create a ‘workerfriendly’ and inclusive environment.

Often a successful work environment for adults with ASD can be described as having an efficient supervisor. This supervisor may have a thorough understanding of ASD, which helps to recognise potential work difficulties and make the necessary changes to enhance job performance.

Lastly, employee supervision is essential in encouraging direct communication between employers, co-workers and employees.

This also helps to confirm correct communication techniques and interpretation of social cues.

Despite this knowledge, the link between the employee, employer and the work environment is often blurred.

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Closing the gap and making the link Our plan is to try to close this gap by developing a tool that can be used in the workplace by employers.

This tool will assist in adapting the environment and making the workplace more inclusive. This tool is called the Integrated Employment Success Tool (IEST).

The IEST will be used with adults who have high functioning autism or Asperger’s Syndrome.

These adults need to be currently employed.

The IEST will be used by their employers to assess their work environment and highlight what possible actions or modifications are needed. We are excited about this project and its potential to enhance employment satisfaction.

Hopefully this will even lead to career advancement for adults with ASD!

We&need&your&help!

Recruitment/ Call out We need the help of adults between the age of 18 to 64 years who have high functioning autism or Asperger’s Syndrome and are looking for employment and/or are currently employed.

We are also looking for employers who are currently employing adult/s with high functioning autism or Asperger’s Syndrome and/or have employed adult/s with high functioning autism or Asperger’s Syndrome.

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What does this involve?

What might be the benefits?

We believe that participants are the experts in their own lives and We need your help! have a valuable wealth of knowledge to contribute to this project.

This is an exciting time in research. This is an opportunity to help develop a tool to help you in your job.

This project is made up of 3 phases. For phase 1 and 2 we need your help to develop the IEST tool.

This involves completing a card sorting activity, answering questionnaires and giving us your viewpoints on employment.

Phase 3 will be at a later stage where we will be trialling the IEST tool.

This tool will assist us in understanding how employers can adapt the work environment specifically to your needs and may create a more inclusive workplace.

In the long term we hope that this will lead to more people with ASD remaining in jobs that they enjoy in a workplace tailored to meet their individual needs.

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The Autism CRC This project is part of the Autism Collaborative Research Centre running across four states, Western Australia, New South Wales, Victoria and Queensland.

The Autism CRC is a national coordinated research effort looking improving the lives of people with ASD.

This current project falls under Program 3: Finding a Place in Society which focuses on adults with ASD and is invested in their post-school initiatives. The Autism CRC is a series of stateof-the-art studies and is invested in helping people with ASD to feel that they are contributing and productive members of society.

CLICK ON PICTURE BELOW WHEN ONLINE TO

VIEW VIDEO ABOUT THE CRC

http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw Autism World Magazine - 74

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For&more&informaFon&about& the&AuFsm&CRC&:

www.auFsmcrc.com.au/

For further information contact: Melissa Scott (08) 9266 3693 or melissa.scott@curtin.edu.au

Melissa Scott

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THE AUTISM WORLD NEEDS

YOU Do you have a story to share to help the next generation of ASD families. Please contact us at Autism World Magazine: Email: story@magswest.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com

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Digital Publishing.

It’s closer and more affordable than you think with magsWest.

Email: contact@magswest.com Autism World Magazine - 77

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KAREN’S AUTISM ITEMS

Sales to make a difference by Karen Davies Hi everyone, my name is Karen and I run a business named Karen’s Autism Items. I am happily married and have two wonderful children, my son Thomas (ASD) is nearly seven and my daughter, Taylor has just turned four.

My Journey on this road started three years ago when I found out my Son, Thomas, may have been autistic and I was referred to the paediatrician. The paediatrician told me that getting the final diagnosis may take 12 months and I started trying to find out as much information as possible about Autism.

Each time I went to the shops with Thomas, he used to have the biggest meltdowns, screaming, hitting himself and crying. Many people would come up to me, telling me that I should discipline him or he should be taking off me as I’m not a suitable mother. This hurt me so bad. So from that moment I decided to talk to my husband, Laurence, about selling Autism Awareness Items and talking to people about Autism at Markets or Shows and thought it was a great idea.

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I came across on Facebook, a post that Nick Avery put up for South West Autism Network (SWAN), and I started to talk to Nick. She invited me to a private group for supporting families living with ASD. With Nick’s and other SWAN members’ help I started really to understand about Autism and this gave me the confidence in talking to complete strangers about Autism.

I started looking on the Internet for suppliers and I found a couple overseas. I sent them a message asking which products I could sell, including a range of bracelets, necklaces and earrings, coffee mugs, teddy bears, silicone and fabric bands, badges and many other products to help raise awareness.

While this was going on, Thomas got his final diagnosis of Autism after 11 months of waiting.

I decided to sell at local markets. The first was Bunbury Undercover Markets at Centre Point in Bunbury, from 7am to 12noon in July 2012. I sold two things that day quite a few people, asked me about. So I thought this was a good start.

Since then, I have done markets throughout the south west of Western Australia including Eaton, Mandurah, Pinjarra, Waroona, Brunswick, Dardanup, Donnybrook, Augusta, Busselton, Cockburn and Pemberton. I have even been asked by schools to attend their school fetes.

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In the first 12 months of starting my business, I have sold 24 coffee mugs, over 50 bracelets and necklaces, more than 600 autism silicone bands, 50 fabric bangles, 100 badges and tac pins.

When I was asked to write this article, I finally sat down and worked out what I have done and I was really surprised. During this time I also started selling Kids Character Clothing and accessories to help attract people to the stall but also to sell the clothing at affordable prices for people like us who can't afford paying full retail.

I have spoken to heaps of people and have met many who work with Autistic Children and people who have someone in their family with Autism and also people who know someone with Autism. I have heard some fantastic comments back like, “Well done for doing what you are doing”, “Wow this is the way to get Autism Awareness out there”, “What to buy, you have some awesome stuff”, "I didn't know you could get this in Australia".

I’ve also had so many amazing experiences on my autism awareness journey.

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One woman saw my post on a buy and sell site on Facebook, and came down to Binninup Spring Festival because she wanted to get gifts for Christmas that mean something.

She has an autistic son and she bought three bracelets, a pair of earrings, two coffee mugs and two key chains.

When I was down at Pemberton last Christmas, I met a couple travelling around Australia, they were from Germany and they told me that they worked with people with Autism. It’s really a small world after all.

My husband Laurence and I were at Mandurah Indoor Market in January this year, where we met a 43-year-old man who had just been diagnosed with Asperger’s. He asked if I could help him to get in contact with a few people that he could share his journey living undiagnosed for so long and share his experiences too. I gave him all my contacts. I have helped many people get in contact with the right people and some of the support groups too, and I always say I will help as much as I can too.

Please take a look at my page, Karen’s Autism Items on Facebook and I might show up near you or I can post anywhere in Australia www.facebook.com/KarensAutismItems My other page for the Kids Character Clothing and Accessories is Karen’s Kidz Stuff and Knickknackz Got an Autism related story/business - LET IS KNOW - CLICK HERE Autism World Magazine - 81

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Meeting The Train #Alyssa#Aleksanian

Living with ASD as an adult

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Communication is The Big Deal for anyone with ASD. It’s the Gordian knot of Aspie issues. The following questions are just too familiar: Why did I get that reaction? What did I say wrong? How on earth did that disagreement begin?

We strive to be precise with language as being misunderstood is an acutely painful experience. Perhaps it is this striving for clarity of speech makes those of us with ASD sound blunt…

I know that on a good day I can walk the NT (neurotypical) walk, talk the NT talk.

On these NT days, my energy is high; I’ve had plenty of sleep, I have meditated and exercised. I have eaten well. I’ve spent time alone drawing and painting, i.e. used my special interests to recharge.

These are the days when, if I were to disclose my diagnosis of ASD, others would say: Oh, you must have a very mild case or Really? But you’re so calm and steady!

That is because I’m a great observer.

I’ve learnt ‘the act’.

Adults with ASD have had many years to absorb other people’s mannerisms; how they interact and respond. It is a practiced and rehearsed act. We know what it ‘looks’ like to fit in. We imitate.

But it takes enormous energy. These rehearsed responses are not innate.

Formulating a response while in a social situation becomes a pure analytical and intellectual exercise.

For instance, if someone asks a question the following is a typical example of my thought process: I try to interpret the question: Am I hearing them right? What exactly do they mean?

I see my own response clearly in my head as a picture.

I scramble to translate that picture into words.

I rehearse my response silently and ask myself: Would that sound acceptable/sensible if I said it out loud?

I think about the tone of voice I need to deliver the line.

I adjust my stance or posture to mirror the other person.

I make a mental note to glance at their face.

I say the response out loud.

I wait.

All of this happens in a few moments. It is not automatic. This script needs to be remembered. It is draining and it’s taken years to perfect.

On a good day, I can remember the steps of this script in order. On a not-sogood-day, the steps get muddled up or I forget an entire step Autism World Magazine - 83

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I forget to look at the person’s face; my tone is monotonous; I misinterpret the question etc- and the result is a conversation faux pas.

Alone or relaxed, with someone we trust, those of us with ASD don’t need to follow a formulated step-by-step charade so closely. People who know us and love us make allowances. We may say the nonsensical thing, or act in the inappropriate way- but it’s ok to become that little bit visible.

One cannot describe how glorious and precious a gift it is to be able to relax, express yourself and be accepted just as you are.

Then there are other days- the very Aspie days- when the energy to interact does not exist, there is no memory of the script and we can’t go into the peopled world. Those are the days that we don’t let others see. We withdraw. On these days aloneness is essential: it is as a need for air. The onslaught of the world is too loud, too chaotic and too bright.

Those are the days of solitude. Then we become invisible on our own terms.

Communication in an ASD world, is an unpredictable animal; it slips and moves.

To our mind, our lack of control over it is often the core reason to avoid it entirely.

Look me in the eye Experts in the field say that people with ASD miss facial cues.

I hold the converse view. I say we don’t miss anything. We pick up on everything.

For example, many with ASD can find it very disconcerting, even distressing, to look directly at someone when they talk.

It’s as though there’s too much static or interference coming from the other’s face- they literally become difficult to hear.

Why? Because we pick up every twitch, every blink of an eye and every subtle movement of a line or a wrinkle: There is too much information.

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Try telling a friend: “Looking at you makes me feel sick…”.

The only way to stop the discomfort once it starts is to go to quiet place and shut the metaphorical door.

Mean what you say The subtle conversational dance that happens between NT’s- the implied things, the tactful truths- that is a world us Aspies don’t have access to; we can’t seem to figure out the rules of that game.

As a friend with ASD once said: I don’t say anything more or less than what I mean… and what I say must be as much as possible, precise.

I believe somewhere deep in our psyche, for the sake of our sanity, we choose not to look at directly at people when they talk because facial expressions and body language hold too much, and often (most importantly), contradict what the other is saying.

To watch someone’s face as they talk, is like seeing the world through the long lens of a camera, zooming incessantly in and out. One’s head starts feel fuzzy and things around and within start to slide.

Nausea is the usual result.

Our bluntness, our occasional inappropriateness tends to stem from our respect and often times, compulsion for the truth.

We do not do subtext, play emotional games or intend to deceive. Some of us are not capable of it; those of us who are, value honesty above all else and would not deceive on the strongest principle.

Precise, hard won communication is too precious, rare and sometimes so frustrating for us to produce, how could we risk subverting it with innuendo?

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There was a moment in a relationship, after another misunderstanding, a friend asked if I wanted to continue on: ‘Did I want to try to learn how to talk with one another?’ he asked.

It was a very difficult question to answer.

After some considerable thought, I answered it with a metaphor: a onesided, completely from-my-own-Aspiepoint-of-view kind of metaphor.

Communication, I concluded, is like a rail line. Communicating with someone is like standing between the rails, on those tracks. The train is the oncoming potential misunderstanding.

So what he was asking me, in essence, was a ridiculous question: Did I want to remain on the train tracks and wait for

the train to run me over, then try and figure what the misunderstanding was all about (while putting my emotional body parts back together)? Or, did I want step off the tracks and walk away into the sunset; realising that being alone, although sometimes acutely lonely, was easier and far less painful than trying and failing to make a stable connection?

Given those two options, the decision seemed a no-brainer.

Yet, despite the hundreds, thousands, of times I have been at a loss to work out where the line of communication went awry, there I find myself again, standing on the tracks, waiting for The Train.

So the question then becomes, Why do we Aspies do this to ourselves?

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Possibly because I, like many with ASD, can’t believe in a world where we cannot make one authentic connection with another human being.

To get off those tracks means we’ve lost all faith in our ability to find a true, genuine relationship. And frankly, to give up on that Holy Grail is a world many of us wouldn’t want to live in.

each other’s company. A secret and special world of their own making.

This story strikes a deep chord with me.

When I’m collecting my metaphorical body parts off the track, I remember this story. Don’t give up.

This absolute friendship is what many with ASD long for.

Contrary to some ‘professionals’ opinion, we, with ASD do long for human connection; we are just not very good at it.

There is a old story about a Sufi mystic, Shams of Tabriz, that comes to mind here.

Shams was wandering the deserts of Persia for years, looking for a true friend, one that could really understand him.

God’s voice boomed down from the heavens and said “What would you give, Shams of Tabriz, for this one true friend?”

Shams, without hesitation, says, “My head.”

He, without flinching, would give his all.

It is after this encounter he finds Rumi, who later becomes the revered Sufi poet. Together Rumi and Shams spent hours in mystical conversation, lost in

Shams as seen by master H. Behzaad

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Diagnosed& at& 39& with& ASD,& A l y s s a& A l e k s a n i a n& i s& 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# ar7cles# wriZen# from# the#'insiders# perspec7ve'#as# it# were,# are# far# more# accurate# and# helpful# to# carers# and# l o v e d# o n e s# t h a n# t h o s e# c o n s t r u c t e d# f r o m# t h e# observa7on# of# researchers.# All# theses# children# with# ASD# a r e# n o w# g r o w i n g# u p ,# becoming# adults.# Let's# ask# them# what# it# is# like# being# them!# What# a# mine# of# informa7on# to# draw# and# learn#from!”

She#holds#a#Masters#degree#in# Teaching,# as# well# as# a# BA# in# Conserva7on#of#Cultural#Materials#and#a#BA#in#Visual#Arts#(yesI#like#most#with#ASD#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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