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Autism World Magazine Issue 23

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Page 1: Autism World Magazine Issue 23

Autism World Magazine - 1 .

Magazine

FREE SUBSCRIPTION

Autism W rld

Issue 23 / December 2014 essential reading for those who care

Page 2: Autism World Magazine Issue 23

Autism World Magazine - 2 .

Autism W rldWelcome to the online version of Autism World Magazine

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C O N T E N T SDecember 2014

10MERRYN(AFFLECKChantal(Sicile7KiraA"moving"tribute"to"a"great"woman

08#SENSORY(MOVIE(DAY(How"about"this"video

18DARE#TO#DREAMMerryn(Af?leckwe"dream"of"our"children’s"future

44SAFETY(TIPSLiane(Holliday(Willey,(

44

08

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© Copyright 2014

MagsWestPO Box 99Mosman ParkWA [email protected]

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.

27GRADUATIONDeb"Flintoff

35MOTHER#INSTINCTLily"Holland

51A#GAPS#SUMMERJacinta"O’Connor

57HOW#ABOUT#THEM#APPLES#Felicity"Sharpe

60CHRISTMAS#PREP!Catherine"Crestani"and"Diana"Wolf

68ADULTS#AND#AUTISM#Maisie"Soetantyo"and"Kim"IsaacEEmery

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

Subscribe free via:autismworldmagazine.com

Editor:Iain Croft

Sub Editor:Heather Paterson

Website:autismworldmagazine.com

Facebook:facebook.com/worldautism

Front Cover:Sensory Santa

Publisher:

10

78#AUTISMACTOFLOVE#Shannon"Penrod

82UNSUNG#HEROLaura"Lewis

86SENSORYBBASED#BEHAVIORSYmkje"Wideman"

27

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Welcome to the Christmas edition of Autism World Magazine.

This magazine has always celebrated the Unsung Heroes of our community. The children, young adults, carers, parents, advocates and people who make a real difference to our lives.

Merryn Affleck, was a true Autism Hero, mother, advocate, teacher, carer and a shining voice for so many. Merryn sadly passed away on November 18.

Merryn was a wonderfully supportive woman, and I am so blessed to have known her and benefitted from her help and support. In a world of stress and back stabbing, Merryn was a beacon for so many.

I live in Perth, Western Australia which is renown for being a place where there is only two degrees of separation. I am discovering that, in the Autism community, that this is also so. Our regular contributor, Chantal Sicile-Kira, was also blessed to have been a close friend of Merryn. She writes for us a wonderful portrait of her friend.

Merryn’s family has given us permission to republish one of Merryn favourite, and now even more poignant Autism World Magazine articles ‘Dare to Dream’.

Our dreams will always continues to evolve, as Merryn’s did, and it is for us all, in our own way, to pick up the mantle of caring, support and advocacy that is so needed in our society.

Best wishes,

Editor’s Note

iain

iain crofteditor and [email protected]/worldautism

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Introducing#the#Autism'Parents’'Handbook'Your#essential#guide#to#services#and#support#in#Perth,#Western#Australia.

compiled'by'Heidi'Brandisdesigned'and'edited'by'Iain'Croft

"If"you"are"in"Australia"order"a"free"copy"by"email"[email protected]

or"go"toissuu.com/autismworldmagazine

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HOW ABOUT THEM APPLES?Sensory Movie Day

CLICK*ON*THE*PICTURE*TO*PLAY*OUR*MOVING*TRIBUTE*TO*ALL*THOSE*AT*SENSORY*MOVIE*DAY

Sensory(Movie(Day(is(for(families(to(feel(welcome(while(their(children(are(free(to(be(themselves.(These(are(a(non9judgmental(

sessions(and(no(need(for(families(to(feel(uncomfortable.

www.facebook.com/SensoryMovieDay

[email protected]

http://youtu.be/R4N1bFbc1dk http://youtu.be/R4N1bFbc1dk http://youtu.be/R4N1bFbc1dk http://youtu.be/R4N1bFbc1dk http://youtu.be/R4N1bFbc1dk http://youtu.be/R4N1bFbc1dk

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Sensory Santa works with Shopping Centres all over Queensland in offering families with sensory needs the opportunity to have a photo with Santa.

Sensory Movie Day founder Chanelle Avison meets Santa

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Merryn Affleck

CHANTAL SICILE-KIRA

"Love&and&live.&There&isn't&3me&for&anything&else,"&is&the&advice&that&Merryn&Affleck,&mother&to&Lucy,&Sam&and&Mac,&gave&to&her&children& when& she& saw& them& last& before& she& passed& on&November& 18,& 2014& in& Queensland& aJer& a& long& bout& with&cancer.&

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Originally)from)Australia,)Merryn)lived)for)many)years)in)the)United)States)following)her)marriage)to)Dave)Roberts.)Merryn)will)be)deeply)missed)on)both)con@nents)by)her)young)adult)children,)her)siblings)and)extended)family,)her)friends)as)well)as)the)families)she)helped)as)an)au@sm)advocate)and)life)coach)in)both)Australia)and)the)USA.

In)Merryn’s)words)from)her)website:)“I)am)Australian,)born)in)Goulburn)in)the)early)1960Ks.)I)had)a)normal)childhood)growing)up)in)NSW)and)Canberra.)I)spent)most)of)my)life)in)Wagga)Wagga,)NSW.)I)studied)Psychology)at)the)Australian)Na@onal)University)in)Canberra)in)the)early)1980Ks.)It)was)there)I)met)an)American)post)doctoral)student.)We)fell)in)love)and)I)eventually)moved)to)the)USA)with)him)in)1985.)Three)kids,)house,)dog,)divorce)later,)I)finally)returned)to)Australia)in)2012)aVer)many)adventures)in)the)USA)where)I)met)some)of)the)most)amazing)and)wonderful)people,)saw)truly)blessed)and)beau@ful)natural)sites)in)the)world,)and)leV)pieces)of)my)heart)and)soul.”

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When)I)first)met)Merryn)17)years)ago,)she)was)president)of)the)North)County)Chapter)of)the)Au@sm)Society)of)America)in))the)San)Diego))area)in)California.)Merryn)was)leading)a)support)group)mee@ng)for)parents)and)even)at)that)first)mee@ng)I)could)feel)her)leadership)skills)as)well)as)her)desire)to)have)parents)realize)the)power)they)had)to)create)a)beZer)future)for)their)children)with)au@sm.)

She)believed)that)if)parents)were)empowered)with)the)knowledge)of)their)au@s@c)child’s)educa@onal)rights)and)what)strategies)could)help)their)children,)they)would)be)beZer)prepared)to)advocate)for)them)in)the)educa@onal)system.

Merryn)and)I)became)good)friends)over)the)years.))

Although)we)each)had)a)child)with)different)needs)at)different)ends)of)the)spectrum,)we)had)the)same)struggles)in)ge\ng)our)children’s)educa@on)needs)met)at)a)@me)when)less)was)known)about)au@sm)and)how)our)children)learned)(or)didn’t).)

As)well,)we)both)had)a)fondness)for)the)ocean)and)watching)sunsets)with)a)glass)of)wine)in)hand.

AVer)a)few)years,)Merryn)and)I)decided)to)work)together)and)put)on)advocacy)workshops)in)our)area)for)parents.))

Merryn and Chantal

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We)realized)that)lack)of)knowledge)was)what)was)holding)parents)back)from)reques@ng)needed)assessments)and)services)and)ge\ng)the)educa@on)their)child)needed)and)deserved)under)the)law.)

Merryn)went)on)to)become)an)advocate)for)many)families)in)Southern)California,)while)I))began)wri@ng)books.

Merryn’s)success)as)an)advocate)came)form)her)fearless)determina@on)that)each)child)could)learn)no)maZer)their)ability)level,)and)each)child)should)have)an)educa@onal)program)best)suited)for)the)child.)

Merryn)also)believed)that)the)parents)and)school)district)should)work)together)and)her)approach)was)one)of)crea@ng)a)dialogue)between)the)school)district)and)the)parents,))and)crea@ng)a)founda@on)for)an)effec@ve)partnership)between)the)parent)and)the)teacher.)Merryn)realized)that)for)the)child)to)benefit,)the)parents)needed)to)have)a)good)rela@onship)with)the)teacher)despite))any)differences)of)opinion,)and)that)is)what)she)strived)to)create)and)preserve.

In)her)last)few)years)in)California,)Merryn)fulfilled)a)goal)she)had)to)become)a)cer@fied)Life)Coach.)

Maremma Sheepdogs

“fearless determination”

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Merryn)wanted)to)not)only)help)students)with)au@sm,)but)also)to)help)the)mothers)(and)other)women))to))discover))their)own)inner)strength)and))purpose.

Merryn)had)always)wanted)to)return)to)her)na@ve)Australia)and)to)be)geographically)closer)to)her))mum)and)dad)and)siblings,)and)to)have)the)opportunity)to)spend)more)@me)with)them.)It)was)not)an)easy)decision)to)make,)moving)to)Australia)in)July)2012,)leaving)her)young)adult)children)in)California.)

Merryn)was)torn)by)wan@ng)to)spend)some)@me)with)her)family)in)her)na@ve)country,)and)stay)near)her)children.))

Merryn’s)hope)was)that)Lucy,)Sam)and)Mac)would)each)have)the)opportunity)to)come)to)Australia)for)an)extended)period)of)@me)once)she)was)seZled)there.)Merryn’s)wish)came)true,)but)sadly)it)was)for)them)to)visit)her)when)she)was)ill,)and)spend))@me)with)her)the)last)few)months)of)her)life.)Merryn)was)so)grateful)to)have)this)@me)with)her)children.

AVer)moving)to)Australia,)Merryn)became)the)Execu@ve)Director))of))the)Au@sm)Northern)Territory,)Inc)in)Darwin)and)helped)many)families)and)the)community)in)this)posi@on.))She)con@nued)her)life)coaching)via)internet.)Eventually)Merryn)became)very)ill)and)moved)to)be)with)her)siblings)LyneZe)Affleck)and)Bronwyn))Krohn)on)Bribie)Island.)

Merryn and her children

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During)her)illness,)my)son)Jeremy)had)a)dream)about)Merryn)and)painted))it.))Her)exghusband)David)and)children)brought)the)pain@ng)to)her)and))it)hung)at)the)end)of)her)hospital)bed.))

Jeremy’s&dream:&&The&Beau3ful&Colors&of&MerrynTruly)I)dreamt)I)painted)the)aura)of)nice)Merryn.)It)was)yellow)and)orange)for)her)brightness)and)fun)loving)spirit.)Justly)there)was)lavender)for)her)caring)of)her)lovely)children.)Indigo)represented)her)knowledge)and)purple)for)leadership)in)the)au@sm)community)and)coaching)of)women.))Truly)nicely)frankly)great)white)represents)hope)from)above.))Green)is)there)represen@ng)her)search)for)peace)within)herself.)Pink)represen@ng)her)love)of)her)children,)family,)friends)and)her)pets)is)present.)Silver)and)gold)are)truly)shining)down)from)above.)

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Although)very)ill)from)cancer)in)the)last)few)months,)Merryn))was)courageous,)gracious)and)truly)apprecia@ve)of)every)moment)she)had)leV.)In)the)month)before)her)un@mely)death,)I)was)fortunate)to)have)the)opportunity)to)spend)a)few)days)with)Merryn)and)to)meet)her)lovely)sisters)and)other)family)members.))Cancer)may)have)ravaged)her)body,)but)it)did)not)lessen)her)spirit.))

One)night,)a)few)weeks)aVer)I)came)home)from)Australia,)I)had)a)wonderful)dream)that)Merryn)visited)me,)that)she)was)healthy)and)beau@ful)and)wearing)a)bright)blue)sweater)that)matched)her)beau@ful)eyes.)In)the)dream,)Merryn)and)I))walked)on)the)beach)near)my)home.)

Then)we)spent)@me)together)in)a)room)that)felt)like)a)spiritual)place)–)calm,)quiet,)peaceful.))AVer)a)while)I)suggested)we)go)to)our)usual)restaurant)on)the)beach)where)we)would)go)to)have)a)glass)of)wine)and)admire)the)sunset.)

But)Merryn)said)she)could)not)stay)any)longer.)She)smiled)at)me,))waved)goodbye)as)she)turned)to)leave,)and)leV)me)in)that)calm)spiritual)place.)When)I)woke)up)from)the)dream,)there)was)an)email)wai@ng)from)her)sister:))

“Merryn)ended)her)long)journey.))We)have)just)arrived)home)aVer)si\ng)with)her)–)myself,)Bronwyn)and)Randy.)))She)went)quietly)and)comfortably.)))It)was)beau@ful”!))

Cancer may have ravaged her body, but it did not lessen her spirit.

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Merryn)may)have)physically)leV)us,)but)her)spirit)lives)on,)inspiring)many)of)us.)Her)greatest)love)were)her)three)children)Lucy,)Sam)and)Mac,)and)I’m)sure)she)is)watching)over)them)every)day.

"Love)and)live.)There)isn't)@me)for)anything)else"

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As parents we dream of the futures for our children. But what happens to those dreams once we get a diagnosis autism. As Merry Affleck always said - we should continue to Dare to Dream.

My son with Autism is now 25-years-old. Not long after he was diagnosed, at age of six in 1994, a more experienced parent told me about this wonderful exercise and I want to pass it on to you.

As a tribute to our great friend Merryn Affleck, and with the kind permission of her family, we are republishing this amazing article that Merryn wrote for Autism World Magazine in 2013.

The Age 25 ExerciseBy Merryn Affleck

DARE TO DREAM

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I have no idea who first came up with this idea, but whoever did, I thank you from the bottom of my heart!

I call it the “Age 25 Exercise.”

Many of my clients over the past 20 years or so will recognise this exercise. It is a “homework” assignment that I like give to each and every family of a school aged child. It can be difficult and heart wrenching to complete, but is also eye opening and extremely fulfilling in the end. So, take a deep breath and here we go….

Firstly, get out a pen and some paper because you will be writing a lot of things down !

I want you to imagine how you would like your child’s life to be at age 25.

Be as detailed as you possibly can. Remember to think about personal help skills, social skills, level of independence, behaviours, friends and other support people, education, travel, love life, driving, etc. Be open to every possibility and DARE TO DREAM!!!

Some people like to create a “dream board” and decorate it with pictures.

Depending upon the age of your child and level of functioning, you might want to include him/her in this process.

Now, once you have all that written down, think about your child at Age 21 – what skills need to be in place at that stage to enable your child to reach the Age 25 dream?

Write these things down too.

Now, think about your child at age 18, what needs to be in place to reach Age 21?

Keep this process going - at age 16, 14, 12, etc.

DARE TO DREAM

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When you have finally finished, you will have created a life plan for your child and recognised the objectives needed to reach that goal!

There are many reasons why I require all of my clients to complete this exercise.

The most important is because from the day we receive the diagnosis, all of the dreams we had for our beloved child disappear. Even the dreams we didn’t even realise we had. Poof!! They are all gone. And we are never encouraged to dream again.

With no dreams to sustain us through the hard times, we struggle just to try and think of how to get through the day, or even the next few minutes. The many professionals we bring into our lives are no help as they think only a few months to one year ahead. Why should they do any different? This is not something that they will have to deal with!

We are never told to start dreaming again; that is a terrible thing for anyone. Humans need to dream. It is how we plan, how we strategise and move forward.

These things help us to feel safe and secure in our lives. Without the dreams, we flounder.

This negatively affects us and those around us. And that is wrong.

Our kids need us to hold dreams for them in our hearts because they rely on us to guide us to them until they have the skills in place to go after their own dreams. This isn’t just for ASD kids but for all kids. I remember when I was first told this exercise, I instantly started finding excuses not to complete it.

How was I supposed to know what my child was going to be like at age 25? Everyone I had talked to at this stage was very clear that there was no way to be able to know for certain what he was ever going to be able to do in his life. I was angry and scared. I was convinced that this exercise was impossible and designed to do nothing more than make me feel even more pain.

I looked again at the directions. I realised I wasn’t required to know what would be, just to dream of what I wanted.

DARE TO DREAM

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I cried, and it seemed there was no way to stop the tears. I began to understand what the diagnosis of Autism had taken from me and what it had also then taken from my child. I knew I had to find a way to get at least some of this back not only for myself, but also for my son.

Without any effort on my part, I started to dream. I, then, dared to write these dreams down.

Dreaming again for our kids allows parents to begin dreaming again for themselves. We start to see things differently and realise that we can have a life. We begin to see that by giving our kids the gift of an independent life we are also giving ourselves the same gift.

We parents of ASD kids have to think on a scale that is far different from the teachers, psychologists and therapists. We have to think of the lifetime of our child, not simply the next school year. No-one else can create that long-term vision, that dream, let alone work for it. This is the major role that a parent plays in the life of their child – holding the vision of the future.

This vision will change over the years.

Merryn and friends

DARE TO DREAM

Every parent has to eventually understand that their dream isn’t always shared by the child. But when we know that we have done our best to create a person who is as independent as possible, then we know that we have done our best.

As I think back on the my own experience with the Age 25 Exercise, and then reflect on the many parents I have known who have also completed it, I wonder if the real gift it gives us isn’t the plan, but rather a way to move through the grief and pain.

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By restoring our ability to dream we are able to hope, to see further than just the next few minutes or today; that brings back a sense of “normalcy” (for want of a better word) because that is indeed the “normal” way of thinking for all people.

Your dream, your vision is a gift you give to your child. Share it with the world, and be prepared to drag the rest of the world along with you – kicking and screaming if necessary. You can do it.

As for Sam and I, our dreams changed over time, as they do for all parents and kids.

This exercise isn't to create a blueprint against which we either pass or fail, but to allow parents to feel more "normal."

Having a dream for your child is something that you take for granted, until it suddenly disappears.

And its loss is profound, adding greatly to the grieving of parents. By coming up with a dream, or a plan, parents move out of the stifling and confining world grief and into hope again.

I had dreamed that Sam would be able to be an independent learner by the time he finished middle school, but it was clear that he needed a lot of support to be academically successful, so he continued to be supported by an aide whenever it was needed.

And I had hoped he would go to college, but while he successfully graduated from high school he simply could not cope with the speed of learning expected at college, let alone the large number of people in a classroom. Sam still feels the "loss" of the college dream as so many of his friends went onto college and university.

He often asks if I think he should try to go back to college. But my dreams for Sam have continued to evolve. I now see that college was more for me and my husband than for Sam.

So I tell him "No, Sam, you don't need college to be successful" and his relief at this statement is always palpable.

Sam doesn't need a degree to be happy and "successful." He needs routine, a job he enjoys, and friends and family to love.

DARE TO DREAM

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These were things that I thought were just so "normal" that I didn't even put them into my initial plan for Sam.

But, over time, I've come to see that these are vital for HIM so I work to make sure that he has them in abundance.

The dream continues to evolve.

Merryn :)

First printed in Autism World Magazine - July 2013.

With thanks to Merryn’s wonderful family for their kind permission in republishing this article and so so many wonderful pictures.

DARE TO DREAM

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Puberty Blueswith 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.

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"In(an(environment(where(the(unexpected(is(accepted,and(all(achievements(are(lauded,(no(matter(how(great(or(small,(

it(is(the(journey(that(is(the(most(important,(special(and(memorable(part(of(all"

GRADUATIONDeb Flintoff

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It seems like yesterday that Josh was in year six and we were sitting at his final primary school assembly. At the time, Year 12 was the furthest thing from our minds.......and now he we are, about to attend Josh's all important year 12 Graduation Ceremony.

My, how he has grown and how time flies !!!

A few weeks ago, the staff at Josh's wonderful Education Support Centre, co-ordinated what can only be described as a warm, touching, fun, sentimental and extremely memorable Year 12 Graduation Dinner. It was definitely a night to remember!

Photos were the order of the day (or should I say night). Well, Josh not being one for fanfare, over excitement, exuberance or multiple photos, told us repeatedly leading up to the event....."ONE Photo ONLY!"

We tried......but there were phones and cameras everywhere, so let's just say the evening was not off to the best start.

We did all the preparation in the preceding weeks: drove past the location, tried on the graduation clothes, talked about the principle giving the students certificates, mummy reading a poem, dinner and of coarse....photos.

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“you could feel the tension and anxiety rising”

But, as we all know, sometimes all the best plans, preparation and forethought in the world just do not go to well....plan.

Dinner was next. For one who has a preoccupation with not being last, Josh actually managed extremely well. Out of 90 odd meals and deserts, his arrived on the table last. Ahhhhhh, you could feel the tension and anxiety rising, but we waited for his meal before we started ours and calmly talked him through. His highly intuitive teacher and education assistant later told me, they could feel the anxiety from their table (several feet away)!

Add to that, a touch of tiredness was brewing as the time was edging very close to Josh's bed time. Knowing the certificates were to be handed out after desert, we bought another glass of lemonade to both revitalise Josh's energy levels and reward his admirable patience.

So began the certificates. Josh was ready at the call of each student's name. After sitting so admirably through dinner, the air was palpable to say the least, as he sat waiting for his name to be called out by the principle.

We are all for positive behaviour outcomes and teaching the virtues of being patient, but it wasn't good...as the principal called out his name, Josh abruptly walked up, took the certificate and muttering angrily, refused to either have a photo taken with the principle or with his graduating year group.

Not exactly what you would call the stereotypical congratulatory or appreciative moment.

To Josh's credit, he later apologised to both the principle and myself, feeling very remorseful and sorry. He knew he had behaved angrily and 'not nice'.

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It is very important to Josh to be nice. After a while and many "apologetic kisses and hugs", we made our way to the dance floor to end the night on a positive note.

After some discussion the following morning on the way to school, together we decided it would be a "nice" idea for Josh to have a photo taken with his principle presenting his certificate to him on the school grounds - a safe and familiar environment - which he did.

In a few weeks, we will attend the official school Year 12 Graduation Assembly.

For this there will be role play, preparation and planning at school, by familiar staff in a familiar environment.

I have no doubt, the assembly will be beautiful and second time round a charm - whatever the play of events, Josh's achievements are the most important thing of all.

Two weeks later.....

I am happy to report, the School Graduation Ceremony today was beautiful and Josh along with his fellow year 12 graduating class, was a happy and proud recipient of his milestone certificate, sash and portfolio.

Well Done Josh!!!

“It is very important to Josh to be nice”

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THE AUTISM WORLD NEEDS

YOU

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Deb

Deb

Do you have a story, about the teenage years, to share to help the next generation of ASD families. Please contact us at Autism World Magazine:

Email: [email protected]

Facebook: www.facebook.com/worldautism

Website: www.autismworldmagazine.com

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Josh

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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.

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CARING FOR THE CARERS

Lily Holland is a Sydney-based Counsellor/Psychotherapist. Her son Lewis was diagnosed with an Autism Spectrum Disorder in 2006. Lily provides both a mother's perspective and counsellor's listening ear and support.

with Lily Holland

Mother’s instinct

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CARING FOR THE CARERS

Just before my mother passed away I spent each day for about a month by her hospital bed, watching her face very intently. It was of course incredibly sad, and an experience that changed me profoundly.

I also had some moments of major clarity during that time.

I’m not sure if this will translate with quite the KABOOM with which it struck me but I’ll try to convey it as best I can. I remember thinking ‘this is what she did with me when I was a baby; she watched me, listened to me, she felt me in order to know what I needed. She learnt to read me. And it’s probably how she always knew when I was fibbing!’

I imagine this is partly how mothers get their ‘instinct’ and this fact became even clearer to me once I became a mother myself.

I can think of numerous times I have been overcome by a ‘knowing’… quick as lightening and clear as day; then to have it immediately confirmed.

So it leads me to thinking about those of us mums who have children who cannot communicate their needs or feelings as well as neurotypical children do; our antennae are stretched as far as they can go and on FULL almost all the time, right?

I know mine is. We develop an especially strong sixth sense, I think.

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I know, I know… it can be hard to hear that voice at times because we also have other bits that are on full and high alert… thumping heart, overwrought nervous system, fatigue etc, etc… Sometimes intuition is buried by a lot of ruminating and mind chatter.

All the more reason to work hard at keeping ourselves regulated (you know I keep going on about that?)

CARING FOR THE CARERS

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There is a well known paediatrician in Sydney who once remarked (not directly to me, so the wording comes second hand); “No amount of qualifications or experience can give me what a mother’s instinct can give me, so I always ask, and take special note of what mothers tell me.”

Gotta love that, right? Smart man.

So when you really need this tool … when you’re making an important decision, when you’re choosing a school, a therapist, or deciding which way to go next with your child… try to listen to that instinct.

Do all the research too of course.

For example, when choosing a school I advise parents to pick three and go see them as well; speak to the principal, take a tour (if possible) and get a feel of the culture.

No matter how good the website looks or what anyone else says. Make contact yourself so that you get that feel…

If you find yourself going left, right, and then around and around and trying your hardest to decide on one thing - that’s usually not it. That’s the mind trying its hardest to get it right. Instinct doesn’t ponder, it doesn’t hesitate, it cuts through all that business, razor sharp and concise; and sometimes it doesn’t even seem to make sense.

CARING FOR THE CARERS

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If you don’t know what I’m talking about, it doesn’t mean you don’t have it. I don’t know how many times I’ve worked with clients who couldn’t read their own instincts. They had them, and often they even used them very well… they just weren’t so aware of it. So it all comes back to becoming as aware of ourselves, and what’s going on in the here and now, as we possibly can. I know that is difficult when your focus is your child, and your child has urgent needs. But it will help you do a much better job, truly.

Here is an interesting link about our gut (and second brain). scientificamerican.com/article/gut-second-brain/

If you’ve reached this far on this page, it is safe to say that right now you are looking at a screen with words on it, hopefully thinking about mother’s instinct.

Now notice whether your shoulders are tense or relaxed… breathe in and notice how your breathing happens whether you try breathe or not… notice the chair supporting your body…and wiggle your toes against the floor, your shoes, or whatever is closest.

You are here. What colours can you see around you? Are you warm or cold?

What can you hear?

CARING FOR THE CARERS

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Practise this exercise, or something similar to make you aware of your present moment…as often as you can. It’s very good for you, and it will raise your awareness and help keep you in the now. Here are some other Mindfulness techniques it you’re interested:

sf-act.com/docs/resources_harris.pdf

Please take very good care of yourselves, so that you’re in the best shape possible for your children; I wish you all a very peaceful and joyous Christmas season.

Lily X

Some thoughts for keeping the ‘silly season’ more sane…

Notice everyone says ‘we must catch up before Christmas?’ Why must you?

Christmas is really only a week or so away by the time everyone is saying this. Consider suggesting that you catch up after Christmas. Less pressure. Spread it out.

Consider telling people that the Christmas season can be overwhelming, so you’re trying to maintain a low maintenance, chilled-out Christmas for a change.

Try to really resist the pull to get involved in any kind of frenzy or rush…

CARING FOR THE CARERS

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When you catch yourself being drawn in, try to imagine the opposite. What if you did not attend the X, or what if you did not take part in the X this year? What if you simply kept things off your plate?

I can appreciate that when children’s expectations have been built up, there is the matter of their anticipation to manage as well. Be sensible about this … keeping it simple is of course easier said than done, so do what you can

As with any situation that is overwhelming… try to compartmentalise. If you really must attend to a lot of planning, events, or tasks; try to break it down into do-able chunks.

And still see if there is anything at all you can take off your plate…

Last but not least - remember that getting together with extended family can be challenging for some of us; it can be useful to think this through ahead of time, and make a conscious decision/agreement to temper your responses.

Just like in that move Home For The Holidays families have a way of taking us right back to the roles we had as children, and this is not always comfortable. Acknowledge it, and consider that Christmas lunch may not be the best place to express or resolve these issues. Go gently…

CARING FOR THE CARERS

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Got a question for Lily?

Or a subject you’d like her to discuss?

An experience to share?

Email us at [email protected]

CARING FOR THE CARERS

Lily Holland Counsellor/Psychotherapist.

Lily practices in Randwick and Parramatta, NSW, Australia. She is also available for telephone or Skype/FaceTime appointments.

Contact: [email protected] or 0402 888 097

Page 43: Autism World Magazine Issue 23

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I(am(a(woman(on(the(autism(spectrum.(For(more(than(Five(decades,(either(one(of(my(caregivers(or(I(have(struggled(to(keep(me(safe(in(my(own(home,(in(the(workplace,(and(when(among(society.(

I’ve(had(the(beneFit(of(great(counsel,(dependable(support(from(friends(and(family,(and(loads(of(safety(awareness(education(and(yet,(I’ve(suffered(from(rape,(theft,(agonising(fear,(low(self9esteem,(a(Financially(devastating(business(scam,(and(a(nervous(breakdown.(

It(frightens(me(to(realise(even(if(a(person(has(some(of(the(most(solid(resources(and(care(one(could(reasonably(expect,(there(is(still(a(very(high(probability(she(may(still(become(a(victim(of(the(ugly(players(and(parts(of(our(world.(

A(good,(solid(and(short(list(helps(me(keep(my(eye(on(the(goal,(and(when(the(goal(is(safety,(here’s(the(list(I(turn(to.(Please(feel(free(to(adjust(it(to(suit(the(needs(of(the(person(the(list(is(made(for.(

Safety Tips for Females with autism

*********By*Liane*Holliday*Willey,*EdD

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1. Carry(a(whistle(or(other(suitable(noisemaker((i.e.,(one(that(doesn’t(cause(a(sensory(overload)(and(practice(using(it(so(you(will(be(prepared(to(use(it(when(in(distress(or(in(case(of(an(assault.(

2. Plan(ahead(before(going(anywhere.(Research(or(ask(someone(in(the(know(to(detail(the(local(customs,(slang(expressions,(dress(code,(social(expectations(and(atmosphere(of(the(place(you(plan(to(visit.(It’s(safer(to(look(like(“an(insider”(or(a(local(member(of(the(community,(than(it(is(to(look(like(a(tourist(or(someone(who(is(lost(or(disconnected(with(the(location.(

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3. Try(not(to(travel(or(go(out(to(new(places(or(areas,(alone.(If(you(do,(have(the(local(authorities(and(a(local(support(group(on(your(cell(phone(and(on(a(card(you(can(safely(keep(on(your(person.(If(the(area(doesn’t(have(a(local(support(group,(contact(a(university(or(regional(autism(group(for(suggestions(as(to(whom(you(might(call(to(Find(someone(who(would(volunteer(to(be(your(neurotypical(advocate,(should(you(need(one.(

4. Learn(and(practice(an(anxiety(relief(strategy.(I(sometimes(practice(meditation(in(a(bathroom(stall(for(a(few(moments(and(I(always(do(a(bit(of(yoga(when(I’m(in(a(hotel(room(or(staying(at(a(friend’s(house.(((((I(use(positive(imagery(when(I’m(in(public(and(can’t(risk(doing(((a(behaviour(that(would(draw(attention(to(myself.(

5. Learn(how(to(properly(follow(the(expected(etiquette(in(high(security(areas(such(as(those(in(airports,(train(stations,(in(banks,(etc.

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1.

!!!!!!Try!not!to!travel!or!go!out!to!new!places!or!areas,!alone.

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6. Carry(and(know(how(to(use(a(GPS.(Keep(in(mind(a(GPS(can(send(you(in(the(wrong(direction,(so(have(a(paper(map(to(back(up(the(GPS.(

7. Share(your(schedule(with(others(and(check(in(regularly(or(at(pre9appointed(times.(If(you(fail(to(do(so,(the(contact(person(will(know(to(alert(First(responders.(

8. Do(not(hesitate(to(leave(a(suspicious(area(as(soon(as(you(can(and(in(as(unassuming(and(low9key(manner(as(possible.(The(key(is(to(be(inconspicuous.(

9. Have(fun,(but(know(your(limits.(Don’t(put(yourself(in(situations(that(challenge(your(system(more(than(it(already(is.(For(example,(as(much(as(I(enjoy(colourful(people(and(music,(I(would(not(go(to(Mardi(Gras(in(New(Orleans(without(at(least(one(good(friend(to(help(me(stay(calm,(focused(and(safe.

10. Take(a(self9defence(course,(but(again,(know(your(limits.(

“know&your&limits”

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Deb

Professor Liane Holliday Willey, Ed.D is an author, autism consultant, keynote speaker, academic researcher, avid horsewoman and owner of an equestrian barn.

She has a Doctorate of Education with a specialty in psycholinguistics and learning style differences.

At 35, Liane was diagnosed with Asperger syndrome.

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SUPPORT US BY SUBSCRIBING FREE TO

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get in on google play get in on googlthe e play get in on google play get in on the google play get in on google play get in on google play get in on google play get in on google play get in on the the goo

Page 51: Autism World Magazine Issue 23

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eatplay

Learn

Essential thinking on food,

education and play from the

most respected minds

across the Autism world.

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With summer upon us in the Southern Hemisphere, it is the perfect time to enjoy some delicious summer ferments, swim in our oceans and lakes to detoxify and grow some fresh greens to add to our juices.

Summer Salsas

You can ferment anything! In the summer, take the opportunity to ferment colourful salsas. While it takes a little time to prepare a ferment, it can save you time in the long run. I tend to prepare one or two salsa ferments on the weekend and these salsas can be used throughout the week. They are great for school lunches. You can add a little fresh avocado with poached chicken and lunch is

sorted for the lunch box, or rather the thermos, to keep it chilled!They are also very handy to have in the fridge to reduce dinner time preparation. Salsa, fresh salad and some poached or grilled chicken or fish, makes for a quick, nutritious and easy to prepare meal.

Jacinta O’Connor is a Nutritionist * Naturopath * Certified GAPS Practitioner * MINDD Practitioner * Additive Alert Presenter

A GAPS Summer

GAPS – Gut and Psychology Syndrome & Gut and Physiological Syndrome) ‘GAPS TM is the registered trademark of Dr Natasha Campbell-McBride

with Jacinta O’Connor

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Ingredients

4 cups diced tomato1.5 cups chopped coriander1 – 1.5 cups minced red or spring onion2 -3 cloves garlic5g sea salt¼ tsp cumin seeds¼ tsp dried oregano (optional)½ finely minced seeded chilli (optional)Zest and juice of ½ lime or lemon1/8 tsp vegetable starter prepared according to packet instructions or 1/3 cup of whey

Method

Gently mix all ingredients and then spoon into a 1 litre fermenting jar.

No need to ensure the ingredients are all under liquid.

Set aside at room temperature for 1 -2 days, then refrigerate.

Consume within 7 days.

Makes 1Litre.

Here are a couple of much enjoyed salsa recipes.

Fermented Tomato Salsa

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Fermented Pineapple and Mango Chutney

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Ingredients

3 cups of ripe pineapple and mango, cubed and peeled (you could also use papaya)

1 Tbsp. grated ginger1 red capsicum (pepper)I small red onion1 jalapeño pepper, seeded and chopped (optional)

½ cup fresh mint leaves, chopped1 bunch of coriander (cilantro), chopped. You could also use parsley.

1 tsp sea salt½ cup fresh lime juice½ tsp vegetable starter prepared according to packet instructions or ¼ cup of whey¼ cup of filtered water

Method

Combine fruit, onion, capsicum, mint and coriander in a mixing bowl.In a small bowl, mix lime juice, salt and vegetable starter or whey. Pour the liquid in with the fruit and stir well.

Add mixture to a clean 1L fermenting or glass jar and press down to firmly pack in.

If needed, top off the fruit mixture with a little filtered water, leaving two cm of liquid above the fruit mixture.

Screw lid on firmly.

Leave at room temperature for 24 – 48 hours.

Store in the refrigerator for up to 2 weeks.

Fermented Pineapple and Mango Chutney

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That statement is a little difficult to argue with when it’s sizzling hot outside!

The stock can be served warm rather than steaming hot.

Alternatively you can make stock without too many herbs etc to flavour it, and add it to a smoothie. Some children enjoy their stock made into an icy pole! There are stainless steel icy pole moulds available for those concerned about freezing foods in plastic.

Greens and Herbs

This time of year, in the southern hemisphere, s perfect for some GAPS gardening. Planting parsley, chard, kale, coriander, spinach, bok choy, pak choy, celery, carrots and beets will give you a great fresh supply of greens for your daily juices.

For those minimising their sugars, just use the tops of the carrots and beets for juicing and ferment the root of the carrot and beet.

Ginger carrots are a great summer ferment and beet kvass is wonderful for constipation, as a blood cleanser, a tonic for your adrenals and of course rich with beneficial microbes when fermented. Plant and ferment some root vegetables to ensure you are including soil based organisms in your ferments.

Sunshine & Seawater

Make the most of the sunshine. Expose your skin to the sun for 20 minutes each day.

Avoid the midday sun on scorching days of course. The more skin you expose during those 20 minutes the better.

“It’s Too Hot to Have Stock”

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Show your belly some sunshine!

Sun on your skin is important for Vitamin D production, healing cholesterol production and your hormones.

Walk or swim in our oceans, rivers and inland lakes.

Taking a steaming hot Epsom salts bath, a GAPS detoxification must, on hot evenings is not always comfortable. A much better alternative is swimming in our oceans and rivers. This is incredibly detoxifying. Not a swimmer? Then walk in the water up to your knees.

You will still benefit greatly.

“Show your belly some sunshine!”

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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. [email protected]

Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and Nedlands, Western [email protected]

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HOW ABOUT THEM APPLES?Felicity Sharpe

When&I&was&in&prep&they&said&I&would&never&8inish&primary&school.When&I&was&in&year&seven&they&said&I&would&get&to&year&10,&maybe.&When&I&was&in&year&10,&they&said&I&would&not&8inish&my&education.&When&I&was&in&year&12&they&said&to&try&and&8ind&a&paid&job,&as&university&was&a&noBno.

Well&I&just&passed&my&8irst&semester&at&University.Chew&on&that,&teachers&and&doctors&who&said&I&could&never&do&things.Believe(in(yourself,(who(knows(you(may(be(the(only(one.

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Christmas&can&be&an&overwhelming&and&exci3ng&3me&for&children&with&ASD.&

Many&children&are&3red&towards&the&end&of&the&year&and&can&be&overs3mulated&by&the&amount&of&changes&leading&up&to&Christmas&(e.g.&no&school,&busy&shopping&centres,&flashing&Christmas&lights,&Santa).&&

Social&stories&and&countdowns&are&fantas3c&for&this&3me&of&year.&

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Some%&ps%for%surviving%Christmas%include:

Choosing&your&baUles&over&the&Christmas&photo.&Some&children&can&be&scared&of&Santa&and&overwhelmed&by&the&sight&of&him.&However,&you&may&be&able&to&find&a&sensory&Santa&in&your&area&where&photos&are&taken&in&quiet&parts&of&the&shopping&centre.&It&may&be&useful&to&show&your&photo&photos/DVDs&with&Santa&in&it&and&talk&about&Santa&prior&to&visi3ng.

Try&and&avoid&taking&your&child&to&the&shops&in&December&as&they&can&be&busy&and&overwhelming.&If&possible,&arrange&for&them&to&be&looked&aJer&or&go&to&the&shops&early&in&the&morning.&Internet&shopping&is&also&a&great&op3on!

Have&an&advent&calendar&–&this&can&help&your&child&with&knowing&when&Christmas&is&and&when&it&is&over.&

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Explain&to&your&child&prior&to&Christmas&morning&that&not&all&the&presents&are&theirs&and&not&all&the&presents&should&be&played&with&at&the&same&3me.

Explain&the&Christmas&day&rou3ne&at&least&one&week&before&Christmas&on&a&daily&basis.&Visuals&may&help&reinforce&the&rou3ne&as&well.&&For&example,&you&might&say&‘In&the&morning&we&are&waking&up&and&opening&the&presents.&Then&we&are&going&to&Nan’s&for&lunch&and&Pop’s&for&dinner’.&This&is&also&important&for&children&who&come&from&split&families.&&

Overall,&try&and&make&the&day&fun&and&about&your&family.&

Have&a&Merry&Christmas&and&Happy&New&Year!

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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

In!the!next!issue!we!will!discuss!star1ng!school.!

Don’t!miss!out!CLICK!HERE!TO!SUBSCRIBE!FOR!FREE

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IS RDI FOR YOU?

with Maisie Soetantyoand

Kim Isaac-Emery

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Adults%and%Au&smMaisie Soetantyo and Kim Isaac-Emery

Parents(raising(children(diagnosed(with(Au3sm(Spectrum(Disorders((ASD)( can’t( help( but(wonder(and(worry( about( their( child's( future.(Ques3ons( such( as,( can( they( have( a( sa3sfying( level( of(independence,(maintain(a(fulfilling(job,(get(married(and(even(have(a(life(outside(of(Au3sm,(are(constantly(in(parents'(minds.((

Anne,)the)parent)of)a)21)year)old)man)with)high)func@oning)Au@sm,)Andrew,)reports)that)the)foremost)concerns)she)and)her)husband)have)for)their)son)is)if)he)will)ever)be)able)to)lead)a)life)with)purpose.))

They)oVen)wonder)what)will)happen)to)Andrew)when)he)has)to)live)alone.))A)major)concern)is)his)mo@va@on)to)leave)his)house)and)connect)with)others;)to)push)beyond)his)comfort)zone)to)learn)new)things)and)to)have)the)ability)to)adapt)when)things)don't)go)his)way.)

Andrew)currently)holds)several)part)@me)jobs;)one)at)a)local)hardware)store)and)another)at)a)local)community)center.)

On)top)of)that,)Andrew)has)a)home)baking)business)during)the)holidays.)

Anne)said)that)because)of)Andrew's)lack)of)communica@on)and)problem)solving)skills,)dealing)with)customers)and)showing)his)employers)that)he)is)capable)of)doing)more)is)challenging.)

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Even)though)Andrew)enjoys)baking)to)fulfill)his)holiday)orders,)he)s@ll)needs)heavy)supervision)from)his)parents)to)run)his)small)business.

Can)adults)with)ASD)have)a)quality)of)life?)Or)are)they)stuck)with)doing)occupa@ons)heavily)based)in)rou@nes)and)repe@@ons?)

The)good)news)is)that)over)the)past)several)years)research)has)confirmed)that)the)brain)is)'plas@c',)meaning)that)the)brain)changes)over)@me)and)at)any)age.)

The)brain's)neurogplas@city)suggests)that)exposure)to)the)right)kind)of)experiences)reorganize)neural)pathways)and)op@mize)neural)connec@vity)in)humans.)This)is)encouraging)news)for)all)individuals)with)Au@sm)and)especially)for)the)adult)popula@on.)

Take)a)look)the)video)clip)above)presented)by)Dr.)Susan)Bookheimer,)Ph.D.,)a)neuroscien@st)from)the)UCLA)Semel)Ins@tute)in)California)on)"Understanding)Connectivity)in)Autism:)Linking)Genetics)&)Brain)Imaging".

www.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6Ewww.youtube.com/watch?v=CIaOKIVZU6E

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Therefore)based)on)the)neurogplas@city)theory)and)a)greater)understanding)of)the)core)neurological)differences)in)Au@sm,)age)is)no)longer)a)barrier)in)learning)how)to)navigate)the)world)in)dynamic)ways.)What)do)latest)Au@sm)research)findings)say)about)the)core)deficits)in)this)popula@on?)

Dr.)Steven)Gutstein,)the)founder)of)the)RDI)Program)summarized)these)deficits)into)5)core)areas:)

Dynamic(Analysis(and(Flexible(Thinking:&The)process)of)evalua@ng)informa@on)in)our)environment)on)a)momentgtogmoment)basis.)This)involves)picking)out)the)important)features)and)placing)less)emphasis)on)peripheral)aspects)of)the)environment)or)interac@on.)"Good)enough")thinking)is)a)major)focus)of)dynamic)analysis)and)requires)one)to)accept)less)than)perfec@on.)This)process)is)significantly)impaired)in)people)with)ASD)and)it)impacts)their)ability)to)func@on)in)rela@onships,)schools,)and)work)places.)

Thus)people)with)ASD)oVen)experience)high)level)of)anxiety)in)decision)makings,)especially)those)involving)new)situa@ons.)

Experience(Sharing:)The)goal)of)most)human)communica@on)is)to)share)observa@ons,)feelings,)ideas,)thoughts,)memories,)plans,)perspec@ves)and)predic@ons)with)another)person.)

Experience)sharing)involves)integra@on)of)con@nuous)feedback)loop)from)two)people)in)order)to)create)something)new.)In)addi@on,)it)calls)for)both)par@cipants)to)have)the)desire)to)explore)the)other)person’s)perspec@ves.)

Experience)sharing)communica@on)does)not)require)a)specific)response)but)rather,)encourages)flexible)thinking)and)reciproca@ons.)

Episodic(Memory:)A)subjec@ve)and)meaningful)representa@on)we)form)of)an)event)in)our)lives,)which)is)strongly)anchored)by)an)emo@onal)appraisal)of)that)episode.)

Episodic)Memory)helps)us)to)form)a)sense)of)ourselves)and)to)an@cipate)the)future.)Individuals)with)ASD)typically)miss)the)encoding)of)the)emo@onal)component)of)an)event,)and)thus)making)sharing)experiences)with)others)and)personal)reflec@ons)very)difficult.))

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Crea<ve(and(Flexible(Problem?Solving:&The)ability)to)modify)one)or)more)known)solu@ons)in)order)to)solve)newly)encountered)challenges.)This)also)requires)an)individual)to)have)the)resilience,)mindfulness)and)adaptability)to)con@nually)monitor)and)modify)the)results)of)those)solu@ons)as)needed)to)arrive)at)a)best)possible)outcome.)“Outgofgthegboxgthinking”)has)become)a)highly)valued)skill)in)the)business)world,)but)a)sta@c)mind)can)only)use)the)data)it)has)memorized)to)solve)problems)it)has)already)encountered)previously.)

Self?Awareness:)Developing)a)coherent)sense)of)self)that)is)unique)and)con@nues)to)grow.)This)self)becomes)the)primary)organizing)principle)for)appraisal)and)evalua@on.)Selfgawareness)encompasses)behavior,)regula@on,)selfgevalua@on)and)emo@onal)regula@on.

These)five)areas)of)Au@sm)core)deficits)are)intergconnected,)and)their)implica@ons)on)one’s)ability)to)obtain)long)term)quality)of)life)are)devasta@ng.)Kim)IsaacgEmery,)a)seasoned)Cer@fied)RDI)Consultant)specializing)in)working)with)adults)with)ASD)shares)that)difficul@es)succeeding)in)real)world)are)based)on)the)founda@onal)core)processing)challenges)in)spite)of)age,)IQ,)language)and)motor)abili@es.

To)help)us)understand)how)the)core)deficits)impact)the)life)of)a)person)with)ASD,)Kim)interviewed)Paul)Louden,)an)adult)on)the)au@sm)spectrum.)Paul)and)Kim)have)worked)together)for)eight))years,)and)they)coghost)a)radio)show)“Understanding)Au@sm”.)Paul)shared)invaluable)insights)for)us)in)his)take)on)ASDgrelated)core)deficits)below.

Suggested Reading

The RDI Book By Steve R. Gustein, Ph.D.

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Kim:)What)do)you)struggle)with)most)being)on)the)spectrum?)

Paul:)It's)really)hard)for)me)to)recognize)any)one)thing)I)struggle)with)most.)Usually)my)answer)will)be)whatever)thing)is)affec@ng)me)right)now,)since)it's)really)hard)to)make)a)qualita@ve)comparison)for)me.)That)being)said,)one)thing)I)find)myself)con@nuing)to)return)to)is)the)ques@on)of)"what)should)I)be)able)to)do?")When)you're)on)the)spectrum,)there)are)a)lot)of)people)who)are)going)to)just)tell)you)that)you're)making)excuses.)That)you)aren't)as)impaired)as)you)really)are,)or)possibly)not)even)impaired)at)all.)There)are)many)people)who)perceive)au@sm,)or)at)least)highgfunc@oning)au@sm,)as)a)fake)disorder.)They)may)classify)you)as)lazy)or)stubborn)or)similar)things.)And)while)I)know)it's)real,)and)I've)lived)through)decades)of)challenges)and)difficul@es,)it)can)be)very)hard)to)figure)out)the)shape)of)the)real)impairment.)Where)are)the)areas)I)genuinely)need)help)in)and)where)are)the)areas)I've)simply)developed)difficul@es)in)through)years)of)setbacks?)Where)should)I)try)to)push)through,)and)where)should)I)accept)my)limita@ons)and)ask)for)help?)Where)should)I)tell)someone)else)"look,)I)need)you)to)stop)telling)me)that)you)believe)I)can)do)it,)I)can't)and)you're)hur@ng)me)far)more)than)you're)helping")and)where)should)I)trust)their)judgment)instead)of)my)own?)Some)version)of)this)struggle)is)something)I've)seen)in)quite)a)few)people)I've)talked)with,)and)it's)one)of)those)places)where)I)know)there)will)never)be)a)clear)answer.)But)it's)the)kind)of)thing)that)saps)confidence)in)your)decisiongmaking)skills,)and)in)doing)so,)saps)confidence)in)everything)you)do,)every)day.

Kim:)How)do)the)core)deficits)of)au@sm;)self)awareness,)flexible)thinking,)Episodic)Memory,)dynamic)appraisal,)experience)sharing)communica@on)affect)your)life?

Paul:)Let's)start)with)flexible)thinking:)A)few)people)have)told)me)I'm)very)good)with)flexible)thinking.)I'm)not)sure)this)is)true.)I)tend)to)see)flexible)thinking)as)a)sort)of)ability)to)think)in)incomplete)ways.)To)say)"it)doesn't)maZer")or)"I)just)feel)like)it")or)otherwise)not)expend)as)much)energy)on)a)thought.)This)allows)the)flexibility)to)occur.)I)think)I've)learned)to)sortgof...)think)around)things.)To)build)a)structure)out)of)my)typically)more)rigid)thoughts)that)allows)me)to)get)there)anyway.)Think,)perhaps,)of)someone)driving)down)blocks)and)then)across,)in)a)city,)rather)than)being)able)to)take)the)straight)path)as)the)crow)flies.)

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It)lets)me)reach)some)of)the)same)conclusions)or)outcomes,)though)possibly)with)a)lot)more)work.)These)skills)in)part)came)from)a)love)of)puzzles,)and)puzzlegbased)video)games.)In)my)escapes,)I)think)I)trained)myself)for)some)of)this.)It)s@ll)leaves)me)dumbfounded)and)confused)when)ac@on)calls)for)what)I)would)perceive)as)irra@onal)behavior,)but)it)at)least)gives)me)tools)to)deal)with)some)of)the)surprises)in)daygtogday)life)without)ge\ng)stuck.

Episodic)memory:)S@ll)working)on)this)one.)I)tend)to)feel)like)the)past)is)s@ll)as)much)a)mystery)to)me)as)it)has)always)been.)I)remember)some)specific)things,)but)I)oVen)tell)people)"It's)like)looking)through)someone)else's)vaca@on)album)when)you've)visited)the)same)place”)g)you)recognize)the)scenery,)but)don't)feel)an)aZachment)to)what)you)see)going)on.")I)have)memories,)but)I)s@ll)tend)to)mostly)feel)disconnected)from)them.

Social)Referencing:)This)is)mostly)a)learned)skill)for)me.)With)people)I)know)well,)it's)become)closer)to)habit,)but)I)s@ll)oVen)have)to)remind)myself)to)pay)aZen@on.)This)is)one)of)the)skills)I)lose)soonest)under)stress.)If)it's)noisy,)or)I'm)@red,)or)any)number)of)other)things,)I)start)to)miss)things.)It)also)@res)me)itself,)so)over)@me)I)get)worse)unless)I)have)a)chance)to)rest)and)recover.)I)tend)to)feel)that)in)some)ways)this)skill)is)too)much)a)focus)when)trying)to)help)those)of)us)on)the)spectrum.)Many)of)the)things)we)learn)can)be)unreliable)with)strangers)or)with)other)factors)involved,)and)so)while)it)can)provide)general)coping)skills,)it)can)also)lead)to)worse)confusion)under)stress.)It's)not)something)that's)perfectly)learnable,)and)I)feel)like)I'd)like)to)start)focusing)on)talking)about)how)as)selfgadvocates)we)can)talk)to)others)about)our)deficits)in)this)area,)and)make)it)more)of)a)"mee@ng)halfgway")kind)of)thing)that)isn't)so)skillsgfocused)for)the)au@s@c)person.

Experience)Sharing)Communica@on:)I'm)s@ll)terrible)at)this.)Even)when)explicitly)asked)what)I've)been)up)to,)or)how)I've)been,)I)forget)things)the)other)person)would)find)significant.)I)actually)really)like)hearing)about)the)experiences)of)others,)but)I)guess)due)to)my)own)episodic)memory)weaknesses,)I)just)don't)tend)to)aZach)to)the)events)in)my)own)life)in)a)way)that)typically)makes)me)eager)to)share)them.

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Kim:)If)you)could)give)some)advice)to)an)adult)who)was)recently)diagnosed)with)ASD,)what)would)it)be?)

Paul:)Start)over.)As)much)as)you)can,)at)least.)You've)spent)20,)30,)40)years)learning)coping)skills.)And)a)lot)of)them)serve)you)well.)Some)of)them)don't.)Some)of)them)back)you)into)a)corner,)or)aren't)going)to)extend)any)further.)Keep)using)them,)for)now,)but)start)over)from)first)principles.)Learn)what)you)can)about)au@sm)and)how)it)affects)thinking)and)interac@on,)and)rather)than)trying)to)adapt)your)exis@ng)coping)skills,)see)if)you)can)replace)any)of)them.)They)were)oVen)built)from)the)outside)in,)focusing)on)areas)where)you)had)fric@on)with)the)outside)world,)and)learning)how)to)minimize)it.)Now)focus)from)the)inside)out,)about)who)you)are)and)how)you)experience)the)world,)and)what)your)new)knowledge)of)au@sm)can)do)to)help)reduce)that)fric@on)in)a)way)that)improves)your)quality)of)life.)If)you)find)your)old)skills)are)s@ll)op@mal,)then)that's)fine.)But)oVen)knowing)about)the)underlying)cause)allows)for)some)fundamental)changes,)and)it)can)be)hard)not)to)let)go)of)things)that)have)worked)so)long)for)the)uncertainty)of)trying)something)now.)Good)luck!

As)Paul)eloquently)put,)there)is)much)hope)in)Au@smgrelated)core)deficit)remedia@on)process)for)adults.)

In)the)upcoming)part)2)of)this)ar@cle,)we)will)share)prac@cal)@ps)for)parents)and)adults)with)ASD)on)how)to)begin)the)process)of)learning)to)navigate)the)dynamic)world)with)a)dynamic)mind.)

Be sure to subscribe to Autism World Magazine, for free, to make sure you don’t miss part 2 of this article

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Maisie Soetantyo

Maisie Soetantyo has been providing RDI supervision and training for families in California and South East Asia for the past 12 years. She firmly believes that through daily mindful engagements parents can make a difference in their special needs children’s long term outcome. Maisie and her husband, Pete Dunlavey, are both seasoned certified RDI consultants who run “RDI Certification Training Programs” for professionals in South East Asia and ‘Destination 4 Day RDI Parent Trainings’ all over the world. To learn more about RDI program, visit: www.RDIConnect.com. For additional questions or comments about this article, contact Maisie at: [email protected]

Kim Isaac-Emery is an autism specialist with experience since 1997 specializing in parent training and working with teens and adults who have autism spectrum disorders. She is a Certified Relationship Development Program® Consultant. She has a Masters degree in Counseling Studies and a Bachelors degree in Psychology. She owns Autism with Excellence, an autism consulting company and is the co-host of “Understanding Autism” radio show on Breakthrough Thinking Broadcasting Network. For additional information please visit www.autismwithexcellence.com

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Page 78: Autism World Magazine Issue 23

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#Au&smActofLove%SHANNON PENRODAUTISM LIVE HOST

Shannon Penrod challenges you to take the Autism Act of Love challenge!  It’s easy to do, there is no ice or water involved and it can help to raise awareness and funds for Autism families. 

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Page 79: Autism World Magazine Issue 23

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Take the #AutismActofLove ‘3 Marker Challenge’ in honour of someone you care about on the spectrum (First names only).

Draw something you love blindfolded (or with your eyes closed).

You must use all three different coloured markers.

Challenge others!

Donate to: www.HelpforAutism.orgUpload to any and all social media with the hash tag #AutismActofLove

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“Some(days(the(world(is(to(big(

Page 80: Autism World Magazine Issue 23

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Dr. Doreen Granpeesheh takes the challenge

Holly Robinson Peete

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Autism World Magazine - 81 .

Kalparrin(operates(a(variety(of(services(and(programs(to(provide(assistance(to(parents(and(children(in(need.

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Page 82: Autism World Magazine Issue 23

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Unsung Hero - Clay,by Laura Lewis

My limited diet 12-year-old son Clay just ate bacon and eggs for breakfast.

Sometimes it's the little things.

TO NOMINATE YOUR UNSUNG HERO

EMAIL: [email protected]

AND DON’T FORGET TO SEND PHOTOS

Page 83: Autism World Magazine Issue 23

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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.”

Page 84: Autism World Magazine Issue 23

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HOW ABOUT THEM APPLES?THE CALMING SURF

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Page 86: Autism World Magazine Issue 23

Autism World Magazine - 86 .

SENSORY-BASED BEHAVIORS

and some things you can do to help avoid them

Ymkje=Wideman=

Here)are)some)@ps)on)how)to)help)a)child)with)Sensory)Processing)Disorder)(SPD).)Of)course,)every)child)is)different,)and)what)may)work)for)one)child,)may)not)work)for)another.

Many&children&on&the&spectrum&are&bothered&by&the&flickering&of&fluorescent&lights.)

If)possible,)replace)fluorescent)ligh@ng)with)incandescent)light)bulbs,)or)add)a)desk)lamp)with)an)incandescent)bulb)to)your)child’s)study)or)work)area.)

Page 87: Autism World Magazine Issue 23

Autism World Magazine - 87 .

Some&children&love&the&calming&effect&of&a&lava&lamp,&a&tabletop&water&fountain,&or&a&small&aquarium&with&one&or&two&fish.&

My)grandson)enjoyed)all)three)at)different)@mes)in)his)development,)and)would)oVen)sit)and)watch)quietly)for)a)while)to)calm)himself.)

Sensory)integra@on)programming)can)take)many)different)forms.)For)some)children,)it)means)that)you)need)to)provide)them)with)sensory)input)at)specific)intervals)throughout)the)day.)This)involves)providing)them)with)as)many)different)types)of)sensory)input)as)you)can,)and)should)include)those)items)that)are)preferred)by)the)child.A)good)@me)to)u@lise)this)method)is)at)natural)transi@ons)throughout)the)day.

Some)children)may)need)desensi@zing)to)certain)types)of)sensory)input)that)they)find)offensive.)It)is)important)to)remember)that)this)is)not)a)choice)for)them,)but)their)inability)to)organize)sensory)informa@on)as)they)take)it)in.

Sensory)overload)is)the)result)of)the)same)problem.)While)you)and)I)can)tune)out)certain)kinds)of)noises)in)the)environment,)children)with)au@sm)frequently)cannot)tune)that)out)and)hear)everything)that)is)occurring,)leading)to)overload.

Monitor)their)environments)and)see)if)there)is)a)way)to)reduce)sensory)input.)Noise)canceling)headphones)can)also)be)useful.

Page 88: Autism World Magazine Issue 23

Autism World Magazine - 88 .

Does&your&child&take&off&his&shoes&and&socks&whenever&he&can?&

He)may)have)very)sensi@ve)feet)and)the)seams)in)his)socks)may)actually)hurt)him.)Try)seamless)socks)and)find)as)comfortable)shoes)as)possible.)Instead)of)lacegup)shoes,)try)those)with)a)Velcro)closing,)for)easy)on)and)off.)In)summer,)your)child)may)prefer)sandals)without)socks.)Experiment)to)see)what)is)most)comfortable)for)your)child.)

Does&your&child&chew&on&his&fingers,&or&salivate&on&his&toys?)

There)are)some)great)“chewies”)available)from)kidcompanions.com.)

Try)and)see)if)you)can)redirect)his)chewing)on)fingers)and)toys)to)one)of)these.)They)are)safe,)durable,)and)easy)to)keep)clean.)

Many)children)on)the)spectrum)do)not)like)to)wear)jeans.)When)the)hard)materialrubs)against)their)skin,)it)can)cause)them)to)become)irritated.)If)sensory)issues)aresevere,)allow)your)child)to)wear)shorts)made)of)soV)material)with)a)loose)elas@c)waist.)In)winter,)your)child)may)prefer)sweatpants.)

http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.htmlhttp://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://www.smartknitkids.com/about_us.html http://

www.smartknitkids.com/

Page 89: Autism World Magazine Issue 23

Autism World Magazine - 89 .

In)order)to)desensi@se)your)child)and)minimize)sensory)challenges,)your)child)may)benefit)from)brushing)and)other)exercises.)Consult)with)your)child’s)Occupa@onal)Therapist)(OT))and)ask)for)sugges@ons)as)to)what)prac@ces)or)exercises)might)help)your)child.)Your)sensorygseeking)child)could)benefit)from)joint)compressions,)wall)pushgups,)brushing,)a)weighted)vest)or)lap)pad,)jumping)on)a)trampoline,)holding)a)fidget)toy,)etc.)

Page 90: Autism World Magazine Issue 23

Autism World Magazine - 90 .

Ymkje Wideman-van der Laan

Ymkje is a writer, editor, and proofreader. She is the editor-in-chief of Motivated Magazine since 2002, and the Web Content editor for Autism Consulting & Training, Inc. and the International Association for Families and Educators (IAAFE) (www.AutismEducates.com). She has written a number of short articles on a variety of subjects, including autism related topics.

In 2006, she assumed the care of her then six-month-old grandson. She cared for him full-time for six years, and continues to help with his care to this day. She is his advocate and is passionate about promoting autism awareness since he first showed signs of high-functioning autism. Her grandson was diagnosed officially in 2009, and is the inspiration behind the Autism Is...? series of children’s books she wrote for him, which are available from ww.createspace.com/3809107 and www.amazon.com.

She is studying, and has currently completed a number of Certificate Courses on autism, including: What early Interventionists Should Know; Assessment for Identification; Cognitive Differences; Language and Communication; Overview of Social Skills Functioning and Programming; Restricted Patterns of Behavior, Interests, and Activities; Screening Across the Lifespan for ASD; Sensory Differences; Antecedent-Based Interventions (ABI); Differential Reinforcement; Discrete Trial Training; Extinction; Functional Communication Training; Home Base; and Naturalistic Intervention.

You can learn more about her and her work on her websites at www.ymkje.com and www.autism-is.com, on her Facebook page at facebook.com/Autism.Is, and on LinkedIn.

Page 91: Autism World Magazine Issue 23

Autism World Magazine - 91 .Magazine

Autism W rld

Resources for Special Needs Australia Facebook group has put together a list of Australian Websites for Sensory, Fidget, Educational and Therapy Products.  We hope you find this useful. Click here to view online.

Sensory, Fidget, Educational & Therapy Products – Australia

Published free in association with Autism World Magazine.

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