Autism World Magazine Issue 10 by Autism World Magazine

Issue 10 /November 2013

Autism W rld Magazine

Autism West Filling the Gap TOBY Playpad in Review Cool Kids Sound Therapy? 1

Autism W rld Welcome to the Digital Download version of Autism World Magazine. If you are opening this on an iPhone or iPod use the “Open in iBooks” option. For all other PDF Readers, please refer to your specific instruction manual. Pictures labelled “Click on picture to play video” will take you to the YouTube to watch our videos.

Hyperlinks, video and emails work when you are online. Book pictures link you straight to Amazon or similar, giving you the opportunity to buy books.

Editor’s Note Welcome to the November Issue, 2013, of Autism World Magazine .This is a unique publication written for and by parents, carers, professionals and those on the autism spectrum, both adults and children. We believe that in sharing the collective wisdom across the autism community, our journeys can guide, educate and uplift others on a similar path. In this special issue we go inside Autism West with Founder and President, Silvana Gaglia. Silvana is one of the most inspirational and driven individuals that I have ever met or worked with. Read her very personal story on why Western Australia needs Autism West to fill the gap in services for those on the autism spectrum. We also hear from the children and parents who make Autism West what it is. Is this like an organisation you are involved with?

The TOBY Playpad is seen, by some, as the most useful App ever designed for newly diagnosed children. We put it under our microscope with an independent review from Merryn Affleck, the Executive Officer of Autism NT. For those of you who wish to know more about the science of autism, Dr Andrew Whitehouse, Head of the Autism Research Team at the Telethon Institute for Child Health Research, updates us on research and why it is so important. Dr Richard Eisenmajer asks us to ‘Imagine having Autism’. We bring you the best Tried and Tested Therapies and essential thinking on food, education and play from the most respected minds across the Autism world. Parents often ask me about what happens my child turns 18? So little is written or researched about this age group. We bring you our 18+ section. Chantal Sicile-Kira, award-winning author, who was recently named one of the world’s Top 10 Autism Bloggers.,guides us through preparing for the world of work. Malcolm Mayfield brings us the view from on the spectrum, and we meet the Australian company that is working to make a difference.

How about the GAPS diet? Creator Dr Natasha Campbell-Mcbride explains why she believes it is the best diet for those on the spectrum. Next month we’ll follow up with practical support on how to sustain GAPS.

Best wishes,

iain iain croft editor iain@magswest.com www.facebook.com/worldautism 3

CONTENTS NOVEMBER 2013

Photograph courtesy: kristymannixphotography.com.au

INSIDE(AUTISM(WEST Enriching(lives(and( :illing(the(gap(in( services(for(families( affected(by(autism.

THE(BEST(APP(EVER? Is(the(TOBY(Playpad( the(best(App(for( families(of(newly( diagnosed(children?

Publisher:

70 WORKING(DIFFERENCE

06 HOW(ABOUT(THEM(APPLES Di(Maitland 08 UNDERSTANDING

Iain#Croft#

Autism World Magazine

71 18Plus

is available digitally for iPad, iPhone, PC or portable device.

Malcolm#MayIield

Dr#Andrew#Whitehouse

76 BLACK(AND(WHITE(

10 IMAGINE(HAVING(AUTISM

Nelle#Frances

Dr#Richard#Eisenmajer

78 CARING(FOR(CARERS

27 TRIED(AND(TESTED

Subscribe via the Apple Newsstand or iTunes or via autismOz.com

Lily#Holland

Editor:

Monique#Simpson

80 THAT(JOURNEY(

Website:

32 SOUND(THERAPY

Monica#Holloway

autismworld magazine.com

81 GENERATION(NEXT(

Facebook:

Jean#Loth

42 OVERWHELMED?(NUTRITION( SOLUTIONS Paula#Tazzyman

Jocelyn#Davis

facebook.com/ worldautism

84 MY(INSPIRATION(

Front Cover:

Silvana#Gaglia

48 THE(GAPS(DIET

89 YOUR(IPAD Andy#Brovey

Dr#Natasha#CampbellDMcbride

53 BOOK(LANGUAGE Catherine#Crestani#and#Diana#Wolf

55 SOUTH(WEST(AUTISM( NETWORK Deborah#Cant

59 LIAM(AND(JACK Erin#Yates

65 PREPARE(FOR(WORK Chantal#SicileDKira

Iain Croft

52 Make%a%splash 5

Kristy Mannix Photography

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.

HOW ABOUT THEM APPLES Di Maitland

â&#x20AC;&#x153;Only a mum who has an autistic son with serious mouth and food issues can jump up and down with excitement when watching a video of him eating his first uncut apple!â&#x20AC;? dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples dem apples

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The Science of Understanding

ANDREW WHITEHOUSE BSc, PhD

Dr Andrew Whitehouse is Head of the Autism Research Team at the Telethon Institute for Child Health Research, University of Western Australia

A group of complex neurobiological disorders that typically last throughout a person's lifetime are known as Autism Spectrum Disorders. The disorder is characterised by varying degrees of difficulties in communication and social abilities, and also by repetitive behaviours. Symptoms range from mild to severe, and it is currently thought that about one per cent of the population has ASD. Autism is often first identified in childhood. No two children with ASD are alike, but there are some signs that many of them share. Experts agree they may be recognisable as early as the toddler years or even sooner. Children with ASD generally have difficulty relating to others; they may hardly speak and, if they do, they may not communicate in ways that other people can easily understand. They don't usually sustain eye contact and have trouble reading social cues.

They're also prone to repetitive behaviours, flapping their hands constantly or uttering the same phrase over and over again. They may also be more sensitive than typically developing children or dramatically less so, to sights, sounds and touch. ASD is diagnosed by a team made up of a Paediatrician or Child Psychiatrist, a Speech Pathologist and a Psychologist. This team examines individuals to see whether he or she exhibits a set of behaviours. This set of behaviours are defined in a book called the Diagnostics and Statistics Manual, or ‘DSM’, which is written by a group of international experts. This book is currently in its fifth edition, and so is called the DSM-5. In the recent past, the DSM had ‘subgroups’ of ASD the depended on the severities of autistic symptoms, ranging from Autistic Disorder (most severe), to less severe, Aspergers and Pervasive developmental disorder not otherwise specified (PDD-NOS).

However, the DSM-V outlines only one group – ASD – which is the term that is used currently. No one knows for sure what causes ASD. Recent studies suggest a strong genetic basis for ASD; up to 20 sets of genes may play a part in its development. However, genetics alone can't account for all the cases of ASD and so scientists are also looking into possible environmental origins, as well as other triggers. There is no scientific evidence that vaccines cause autism. There is no ‘cure’ for ASD. There are many treatments and therapies available, but ASD experts have yet to agree on any that will reverse the diagnosis. But there's lots to be hopeful about; scientists are hard at work every day finding a solution for this growing problem. Until such a cure is discovered, parents have been relying on early intervention programs to mitigate the behaviours associated with ASD.

Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute Telethon Institute mailto: autism.childhealthresearch.org.au mailto: autism.childhealthresearch.org.au mailto: autism.childhealthresearch.org.au mailto: autism.childhealthresearch.org.au mailto: autism.childhealthresearch.org.au mailto: autism.childhealthresearch.org.au mailto: 9

Imagine having Autism Dr RICHARD EISENMAJER BBSc (Hons), PhD, MAPS

Dr Richard Eisenmajer PhD is a Director of The ASD Clinic in Melbourne, Victoria. www.theasdclinic.c om.au Dr Eisenmajer is one of the keynote speakers at the 2013 Autism: The Whole Child Conference (Geraldton, Perth and Busselton) presented by Autism West. He specialises in the assessment of Autism and Asperger's Syndrome and the provision of counselling and practical behavioural interventions for clients, their families, as well as education services and professional organisations.

Over the past decade many adults with high functioning autism and Asperger Syndrome (these terms are used interchangeably) have written and published books about their experiences and feelings. These works have given the ‘neuro typical’ population an insight into the autistic world. We can now begin to understand how children and adults with autism think and feel. This increased understanding has led to more successful management techniques. The major diagnostic areas of impairment in autism are social interaction, communication and play, but I think these are secondary to the impairment of imagination. The “Theory of Mind Deficit” hypothesis proposed that a person with little or no imagination would find it difficult to understand what another person might be thinking. The predicted behaviours in the social, communication and play skills are confirmed in people with autism.

How does our imagination dictate our day-to-day thinking processes? We have an ‘imagination factory’ inside our heads, used often without us really being conscious of it. As we observe someone else’s behaviour we are very quick to theorise or imagine why they are behaving in that way. We cannot ‘read their mind’, but we are very good at imagining what they may be thinking in order for them to behave in that way. An example is when we see someone waving to us. Do we ask why she is shaking her hand in the air? No, we make an instant guess – she wants to communicate with me. We are equally as quick to dismiss other possibilities, like the possibility that she is shooing flies, based on our instant judgement. Another everyday example of our use of imagination is in conversation. As someone is speaking, we make constant use of our imagination – “why are they saying that and what can I say to join in the dialogue, and what will they think if I say that?”

Children’s pretend play is an important part of the development of imagination. Children frequently pretend, or imagine, that one object, such as a banana, could be ‘used’ as a telephone. Children with autism find pretend play very difficult – they tend to engage in ‘reality’ play by copying what they see around them – the other children or their favourite video. The lack of pretend or imaginative play is a key diagnostic tool – the young child with autism is rarely capable of spontaneous, creative, flexible play. What is it like to not have the imagination skills to be able to instinctively guess what is going on in someone else’s head? A more able person with autism has reported that he is exhausted by the end of the day from the time and effort required to ‘compute’ everything to help him decide what to say, do and think. Because it takes him time to work out how to respond, he is easily misunderstood, thus compounding his confusion.

By the end of the day (when he returns home) he is exhausted and this is often reflected in his behaviour. Being in crowds with people behaving differently is a further complication. Most people with autism dislike groups of people – sometimes they get excited but don’t know how to engage with the group; other times they can withdraw, or become angry, or panic. To understand a little of what it must be like, picture those times you have tried to come into a conversation half way through. It takes time to ‘work out’ what is going on and when, or if, it would be appropriate to enter the conversation. Many people with an autistic disorder report experiencing frequent panic attacks. One person has talked about living from minute to minute because he is unable to anticipate or guess what is likely to happen next. When his tram for work is late, he has a panic attack because he

is unable to ‘imagine’ how he will be able to get to work. To be able to predict what may happen later on, the next day or next year is nearly impossible. Many people with an autistic disorder develop rigid structures or routines. From reports we now know they do this, consciously or unconsciously, to help them ‘manage’ the chaos they experience. Some more able people have stated that if most events happen in a predictable sequence, they have more energy available to somehow manage the unpredictable. Even then, assistance, often in the form of visual prompts or rehearsed ‘scripts’, is often needed – a card in the pocket prompting to get a taxi if the tram is more than 10 minutes late, or a script (such as a Social Story) outlining the routine if a teacher is absent – these are important strategies to develop.

Everyone experiences anxiety, some more than others. So too for people with an autistic disorder. This goes some way in accounting for the variation we have observed along the autistic spectrum. The more anxious a person with autism is, the more rituals and routines they are likely to develop. Low functioning children with little or no capacity for imagination have a great need for rigid and inflexible routines, as well as stereotypies such as hand flapping and rocking. At the higher end of the spectrum, the person with more imagination may have a decreased dependence on routines and rituals once they become familiar with a situation or environment.

Parenting the child with an autistic disorder is made more difficult by their imagination deficits. How many parents have felt that punishment seems to make no difference to correcting ‘naughty’ behaviour? Autistic children are often deemed to be manipulative or behaving badly on purpose. For a child with little or no imagination this is almost impossible. To manipulate or purposely distress a parent requires the child to imagine what his or her parent is thinking and to try to change those thoughts to their advantage. ‘Naughty’ autistic behaviour usually reflects the child’s difficulty in understanding what is going on around them – their behaviour is a reflection of their increased anxiety and confusion and routine

‘punishments’ only make them more distressed. In fact, ‘time out’ is often just what they want (and need) – a quiet space with no ‘people’ demands! We ask huge things of children with an autistic disorder. We send them into adverse environments that are full of people and events, such as schools and shopping centres. We demand social interaction. We want them to join in conversations. We want them to play with other children. We often require them to give up a ritual, routine or obsession which has been helping them to reduce their anxiety. We send them from the structured classroom to the unstructured playground ‘for a break’. Children with autism

“Try to imagine what it is like for the person with an autistic disorder to live in our world.” have to work even harder in the playground – to make sense of the myriad of rules for social interaction. Playtime or recess is no break unless a structured, predictable recreation routine is developed to support the child with autism.

It is important that everyone – parents, extended family, teachers and friends – understand that children and adults with autism are not like average people. They do not think in the same way and they should not be treated ‘like everyone else’.

This can and should include a small group of peers who understand the child and have been taught how to respond positively.

Choose recreation activities carefully – team games like football or basketball are not overly successful, but individual activities such as tennis, golf, tenpin bowling or chess are more so. Computers, video games and the internet are much enjoyed by many people with an autistic disorder.

An autistic child at a school that has a small PlayStation room, where one peer per break is allowed to share the activity, has gone from being the bullied outcast to the most popular child in the class.

Careful guidance can ensure they become shared activities in a number of ways – interactive and shared games and programs, chat rooms and special interest clubs. Make allowances for the enormous effort they put into getting through each day – is homework more important than time to recover from a highly stressful day? Try to imagine what it is like for the person with an autistic disorder to live in our world. Dr Richard Eisenmajer with Amanda Golding You can connect with Dr Eisenmajer via www.theasdclinic.com.au

e d i s n

Working with families to find and deliver solutions for the life-long challenges associated with the Autism Spectrum. INNOVATIVE THERAPY AND SOCIAL GROUPS • Kids Club 6-12 years • Youth Engaging Successfully (Yes Group) 13-18 years • Aspiring Adults • Bike riding lessons • Sibling’s workshops • Drama Groups • Secret Agent Society • Mindfulness 18+

ARGONAUT AUTISM RESOURCE CENTRE

COMMUNITY AND FAMILY SUPPORT

An extensive library and resource centre specifically focussed on all aspects of autism spectrum disorder. Members can access books, DVDs, development resources, specialist software, toys and computer games for all ages; as well as use of computers, the internet and a laminator.

• Drop-in centre. • Education and networking sessions including conferences and seminars. • Parent Advocacy AUTISM AWARENESS One of our main goals is to create a better understanding of Autism in the wider community through education programs and events such as the Autism: The Whole Child Conference.

Au#sm&West&Support&Inc&&&&&&&&|&&&&www.au#smwest.org.au 41&Broadway&Nedlands&WA&6009&&&&|&&&PO&Box&666,&Nedlands&WA&6009,&Australia Tel:&+61&&(0)&8&6389&1833&&&|&&&Fax:&+61&&(0)&8&6389&2600&&|&&&Mobile:&+61&&(0)&414167345

WHY AUTISM WEST SILVANA GAGLIA President Autism WestÂ

Autism West, in Perth, Western Australia, formally known as FOCAS Incorporated (Focus on children within the autism spectrum) was formed in 2001 by a passionate group of mums, who met at early intervention, to support each other and raise funds for resources to support Early Intervention Therapy. I was fortunate to meet and network with this wonderful group of mothers.

A group of six to eight dedicated mums of children on the spectrum volunteered their time and worked tirelessly to keep the cogs turning. In 2003 I was nominated to the position of Chairperson. My passion to be able to support families on their journey grew as I learned more about the disorder. I felt a sense of duty to share what I had learnt. Over the years FOCAS was becoming a household name to families affected by autism.

In September 2002, I was coaxed into taking up the position of vice chairperson. At this stage I was two years into my autism journey. I had learned a lot and felt confident I was able to support families by making myself available and share my experiences.

In 2008, FOCAS was approached by a few parents of children with an ASD that had corporate connections. They acknowledged the great work that we did for the ASD community. They offered to help FOCAS with fundraising and lift its profile, taking the organisation to a whole new level.

FOCAS slowly grew from 20 members to 200 members. The membership base spread across the Perth metropolitan area and some country areas. We were a kitchen table parent group which supported, advocated and offered services to fill the gaps to families affected by an Autism Spectrum Disorder (ASD).

A special meeting was called and FOCAS was re-branded to Autism West Support Incorporated. The constitution was revised and a new Board of Management was nominated. 15

The new board was innovative and had lots of energy and connections. It was instrumental in organising a major fundraising event - the iinet Team Sprint Cup, a corporate swimming competition. This fundraiser was a huge success raising in excess of $80,000 in the first year. These funds enabled Autism West to lease a premise and employ a part-time executive officer.

ahead. Due to its success, the iinet Team Sprint Cup is an ongoing fundraising event. Autism West aims to facilitate programs and initiatives that empower families, affected by an autism spectrum, disorder to live a better life. For the individuals with an ASD and their families, we aim to assist meaningful engagement in the community by identifying gaps and unmet needs in current services and support the implementation of programs that range across an individualâ&#x20AC;&#x2122;s lifespan.

The board embarked on strategic planning to articulate the vision and mission, and map out goals and objectives for the years

Together with the support of Corporates and our many supporters we will continue to grow, building relationships in the community with a view to opening up 16

opportunities to people affected by an ASD and their families. We hope they will acquire and enhance their skills that will assist in successful integration into their community and enrich their lives. As a parent of a child on the Autism Spectrum and current president of Autism West, a dream would be to overcome this 'Life Mystery' of the missing puzzle piece, to heal its causes, to find a cure. This may not happen in my lifetime. It is up to all of us to ensure our children are understood and respected. With the right understanding and support, people affected by an ASD can thrive, develop and be part of the mainstream community. I have been part of this community for over 16 years. It is part of my life forever. I believe it is up to all of us to make sure we are doing what ever we can in ensuring we contribute to creating a better future for our children. Any contribution, however big or small, in time or in kind can make a difference. The Autism West Centre is a place of welcome for all. Drop in and see us. We would love to meet you. Silvana

MAYA

â&#x20AC;&#x153;These kids teach all of us so much more about ourselves than we ever teach themâ&#x20AC;?

by Deryn Gurney

Our story is a familiar one to many of you. A beautiful, perfectly formed baby girl. Concerns of hearing problems dismissed and replaced with more frightening prospects. Complete despair and disbelief in a diagnosis of mild to moderate autism. Nights spent in silent tears of grief. It's a chapter of our lives that my husband, Glen, and I will never forget. But from that darkness rose a strength in us that was so much more powerful. It was a new chapter, a new book really. One of dedication, determination and mostly of being completely spellbound by our amazing little girl who sees the world so differently. She is smart, sensitive, funny, passionate and

elusive. Most amazingly, though, is that people who know her find her just so enchanting despite the fact that she never plays by society's social rules. We got to work. We called in all of our angels. Our two older kids became incredible therapists. Sam, our son, can horse around with her for hours. He tickles, chases, jumps out at her, tackles and blows raspberries with such infectious energy. Bells, our big girl, is the carer, stylist and has an incredible ability to talk her through meltdowns. Nan and Pop just adore her unquestionably. They spend lots of time together and the feeling is mutual. Her best and only friend, Lily, just connects with her, sharing her interests. They 18

sing, dance, make up stories. It's delightful to watch. We chose to pursue DIR Floor Time therapy with Kathy Walmsley, a decision I am thankful for every day. Getting on the floor and meeting Maya in her world, sharing her interests and having fun together is such a positive way to conduct therapy. As kindergarten loomed over us, we decided to change tack. I felt that she needed to practice conforming and regulating in a group setting. And she was miles off. I employed a number of delightful young OT students whom I trained to deliver ABA therapy, with a floor time twist; very controversial as people tend to be in one camp or the

other. The formula worked for us. I spent the next year juggling therapies and attending prekindy as Maya wouldn't let me leave her. I drank a lot of cappuccinos and chewed my nails to the quick at the back of the pre-kindy room that year. There were days when I couldn't get her through the door. Many days would end in tears. It took the whole year to get her to sit on the mat for story time. Her kindergarten year was much more positive. We managed to secure a place for her at the Sunshine Room at the University of Western Australia. She was in a class of four students, all of whom were on the spectrum. She thrived in the intimate environment where her sensory profile and language challenges were so well understood.

advertised in the monthly newsletter and we were away.

crafts, the library and, the fantastic range of toys.

My goals were pretty simple.

We have grown. We now have eight kids attending with a parent each and at least one volunteer helper, usually a university student studying psychology or speech therapy.

I wanted to bring together kids with high functioning autism (an ambiguous term I know!) and their parent/s to provide the opportunity for the children to practice their social skills in an unstructured and nurturing environment. Parents also benefit from the support and friendship they provide to each other. A weekly activity was to be organised, with the intent of tapping into the children's interests and helping them to engage with each other.We began modestly, with two enrollments. On reflection it was really nice to start small and feel our way through. Autism West is a fabulous venue and, as a group, we utilise all of the facilities. The kitchen for cooking activities, sports equipment, arts and

The next year we found Moerlina Primary, a lovely, little, independent school, where her educational and social needs have been pursued passionately by a very dedicated staff. A couple of years ago I began to wonder if Maya might benefit by socialising with other children on the spectrum. Maya participated in a fabulous bike riding class at Autism West. At around the same time I had the pleasure of listening to some older kids on the spectrum speak of the friendships forged at ‘YES Group’, a teenaged social group run, at that time, by Carol Ward at Autism West. I was inspired to start a "Kid’s Club" for eight to 12 year olds. I spoke to Gabriella, the program coordinator. We outlined the objectives for the group,

Our weekly activities are the highlight for the kids. We have built volcanos, flown rockets, made fossils, baked delicious treats (gluten free of course) celebrated birthdays, played cricket, chasey, hidey, hideychasey, the list goes on and on. Participation for the kids is completely voluntary and done with gentle and subtle scaffolding of the parent group. To be perfectly honest, I think it is the parents who benefit the most. ‘KIDS Club’ is a place of support and understanding. We share our autism lives, without judgment. There is a strong sense of solidarity among the

group. A deep understanding that we are in this together, travelling the same road with the same challenges and worries. If I could sum up in one word what the Kids Club gives to all of us, it's courage. There is an incredible strength in that. Maya’s beautiful Education Assistant, Jo, laminated a quote that sits on our bookshelf. It says, “Courage does not always roar. Sometimes courage is a quiet voice at the end of the day saying, I will try again tomorrow.” I see that quote play out in my girl’s life every day. These kids teach all of us so much more about ourselves than we ever teach them.

Autism World Magazine is about giving you a totally interactive experience through sharing video, letters, stories and photographs of your autism journey. We have been overwhelmed by the support from the autism community and from people just like you, who have sent in their amazing REAL LIFE stories to share with you. And we would love to hear your stories too. Send us Your Story for a chance to win a same day return family ferry passes, to Rotto courtesy of our friends at Rottnest Express You can contact Autism World Magazine HERE Email: story@magswest.com Friends

SEBASTIAN

HELLO I’m Sebastian. I have High Functioning Autism. I absolutely loves Dinosaurs and Dragons and I want to be a Paleontologist when I grow up. I really enjoys going to Kids Club at Autism West. One of his favourite activities was making dino fossils. I would love to find a penpal who also is dinomad, so we can talk to each other. Dino Pals can write via contact@magswest.com 21

Can you ? Youth#Engaging#Successfully##(Yes# Group)#is#where#adolescents#in# Perth,#with#High#Functioning# Autism#Spectrum#Disorder,#can# gain#support#in#reaching#the#social# demands#of#their#senior#school# years#(13#D#18yrs)#. Youth#are#supported#in#exploring# their#social#aspirations,#with#a#view# to#enhancing#their#interaction# within#mainstream#school#and#the# wider#community.#The#members# are#the#driving#force#in#this#youth#

group.##Activities#are#chosen# depending#on#their#interests.#All# appropriate#and#reasonable# requests#are#considered#within#the# budget#constraints.#This#is#a# supportive,#nonDjudgemental# environment#where#all#members# are#treated#with#respect.# Members#may#also#speak# conIidentially#with#youth#workers# and#trained#staff#who#are#available# to#listen#and#assist#where#possible# with#social#and#life#skills#issues.#

You#can#contact#the#Autism#West# ofIice#to#book#in#for#this#group. Linda#GreenwoodDTully,#Autism#Westâ&#x20AC;&#x2122;s# YES#Group#Leader#brings#years#of# experience#working#with#youth#and# adults#on#the#Autism#Spectrum#with# Uniting#Care#Wests#Take#Time# Programme.# She#has#a#Bachelor#of#Social#Science# (Children#and#Family),#CertiIicate#4#in# Workplace#Training#and#Assessment# and#a#Graduate#CertiIicate#of# Occupational#Health#and#Safety.

Are you 13 to 18? Come hang out with us at Autism West Fridays 4-9pm

YES we can Hi,#I’m#Sarah,# I’m#17#and#I# love#drawing,# music,#dancing,# Pokemon,# anything# Nintendo#and# going#on#the# internet.# I#love#writing# my#own#stories# and#letting#my# imagination# run#wild,#I# have#made#up#over#100# different#characters#and#I# hope#to#publish#a#book#one# day.#

I#started#coming#to#YES#Group# at#Autism#West#three#years# ago#and#I#really#love#it!#I# always#look#forward#to# meeting#my#friends,#play# video#games#and#hang#out# together.# In#August#I#started#a#band# with#YES#group#friends#Tyla,# Rachel#and#Will.#We#are#called# It#Takes#Four.#One#day#we’re# gonna#be#FAMOUS! My#drawings#include#pictures# of#my#friends,#Pokemon# characters#and#many#other# characters#I#made#up#from#my# stories.

I#asked#Dean#Blanchard#of# Music#Rocks#Australia#to#help# me#make#my#dream#come#true# and#now#we#get#together# every#Saturday#at#MRA#HQ#to# practise.#We#hope#to#have#a# concert#performance#at#YES# group#soon.#

“…Sarah has blossomed since attending the YES Group. Initially reluctant to go, we now can’t keep her away. She’s made friends, enjoys a range of activities and can’t wait for Friday to come around.” Marcie and Mal Cronstedt (parents).

Lycra-clad and serious

May 2013: Six urbanised businessmen on mountain bikes decide to tackle Western Australiaâ&#x20AC;&#x2122;s Gibb River Road in a gruelling 700 plus kilometre team relay event from Derby to Kununurra in Western Australia.The Gibb River Mountain Bike Challenge. Brothers Cameron and Adam Shephard, Peter and Michael Crowther, Peter Dowling and Jon Smeulders took up the challenge for the first time. While some competitors were fully fit, lycra-clad and serious about cycling, these guys were more about fun, friendship and fundraising. Their target: finish in one piece and raise $75,000 for Autism West. Along with the heat, humidity, corrugations and dust unseasonal rains added to the challenge. The team performed above expectations and raised $120,000 for Autism West and the Royal Flying Doctor Service. This is the highest fundraising of any Gibb Challenge team and it wouldnâ&#x20AC;&#x2122;t have been possible without the support from corporate sponsors, and every individual who dug deep to donate. Major Sponsors

Enriching the lives of people affected by Autism in Western Australia

www.autismwest.org.au

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TRIED AND TESTED WITH MONIQUE SIMPSON Speech Pathologist Ba.App.Sc (Sp Path)

Unravelling the Mystery of Language Comprehension in ASD

Monique Simpson

As the founder and speech pathologist at Connect Therapy in Sydney, Monique Simpson has specialised in the field of autism for 12 years, treating only children diagnosed with ASD. Through the diversity and volume of clients under her care she has developed an enormous wealth of knowledge and practical experience on effective ways to treat children with ASD, Asperger’s and PDD-NOS. Monique brings Tried and Tested solutions to those across the autism spectrum.

www.connecttherapy.com

In my early twenties I travelled through Europe with my great friend. I remember being in numerous situations where I was incredibly envious of her ability to be able to understand the accents of the Europeans. She was able to easily converse with them and really enjoy their company. I on the other hand spent a lot of these interactions feeling uncomfortable, less connected and confused whether they were actually speaking English or not. Before going overseas I had learnt a bit of Italian and when we reached Italy I was really keen to give it a go. However, my success was completely dependent upon whether the Italians spoke back to me slowly, clearly with simple language. If this happened then we were able to converse and share meaning. If not our interactions were incredibly brief and to be honest a little disheartening. 27

I will often use these examples when explaining to parents with a child with ASD, how comprehension challenges can REALLY affect a child’s emotional regulation and desire to connect and interact with others. It’s interesting how in speech therapy there is often such a big focus on improving speech (expressive language). However a child is not going to be able to effectively express what they do not understand and therefore therapy should always be trying to help the child gain a greater understanding of the world around them (receptive) before focussing on speech. When working with children with ASD it is really important that we try and gain a clear understanding of what language that they comprehend. This is important so that we can pitch our language at an appropriate level and share greater meaning with them.

Working out what they are able to comprehend is not always easy for a few main reasons: • What a person really understands is usually very private to them. • Children with ASD are often challenged with joint attention and therefore it is often tricky for them to follow instructions, answer questions and respond in conversations, that help us to work out what language that they are • Administering formal speech and language tests are sometimes not possible and often don’t give us a lot of information about what the child really understands in day to day life. Tuning into comprehension strategies Sometimes children with ASD can 'trick' others into thinking that they understand a lot more language than they actually do.

We ALL rely on these comprehension strategies in conversations with others. In fact all babies between 9 -12 months of age learn how to really tune into these cues and it is not until a child is between 12-18 months of age that they start to understand the meaning of words outside of familiar contexts. This is when receptive language development really takes off. Early on in therapy I prioritise making sure that my clients are able to tune into and make meaning of gesture and intonation cues.

Instead of them specifically comprehending language they will use different cues/prompts to help them understand what is happening (i.e. gesture, situational (context) as well as intonational (voice)).

This is important because as we know 75-80 per cent of the meaning of a message is conveyed nonverbally and therefore it is really important that the child is able to understand the meaning of a range of non-verbal cues (nod/shake head, pointing, facial expressions).

Being able to pick up on these cues to generate meaning is actually a really important skill because it means that the child can use comprehension strategies to help them with language learning.

In addition, improving the child’s ability to tune into these cues is also an important prerequisite for good joint attention, which is often a strong predictor of language success. 28

Tuning into voice Children with ASD can often be less motivated to tune into the voice of others. In a study by Dawson, Meltzoff, Osterling, Rinaldi and Brown in 1998, children with ASD were found to show deficits in tuning into social stimuli (their names being called, hand clapping) but not non-social stimuli (rattle, musical jack-in the box). I also find this to be the case in treatment but it IS possible to help children with ASD develop their desire to tune into voice and other social stimuli One way to help kids want to listen to you is to make your voice sound like an instrument, using lots of interesting noises (weeeeeee, boooom, CRASH, o-oh), sound effects (loud, soft, fast, slow) and singing. It is also really important to make sure that you use mainly statements in your conversations (e.g. “That looks like a yummy ice cream”) rather than ‘testing’ questions (e.g. “What are you eating?”).

Nobody likes to feel that they are being tested for information. We want to encourage the child to ‘tune in’ to language rather than withdraw ...so we need to make it enjoyable.

Building receptive vocabulary

Higher level receptive concepts

After building the child’s desire to tune into the voice and the nonverbal cues of others, the next priority is to help build their receptive vocabulary of simple key words that they use in their life.

The order in which I teach concepts like prepositions, pronouns, verb tenses, plurals, reason clauses, feelings, various question forms, perspective taking is based on an understanding of when they typically occur in development as well as what is important for the child.

The most effective way of doing this is through labelling things that the child is attending to. Why? ..because shared attention is essential for the child to be able to relate the word to the correct object/ action etc. Since it can often be difficult to shift a child with autism’s focus to where our attention is, our job initially is to label what THEY are attending to.

For example children start to comprehend ‘more’ and ‘finish’ between one-two years of age and the concept of “First banana then play outside” between two-three. Whereas the concept of reasoning, e.g. “You can’t go on the trampoline because it has been raining, it is very wet and you might get hurt.” is typically grasped between three to four years of age.

In time, as the child’s joint attention improves it will be easier to teach the child words/concepts that someone else considers to be important.

To help families understand what language that they should be using with their child I have created some developmental models with a stepby-step structure to language acquisition.

Using photos in your day-to-day life can also be a fabulous way of helping build receptive vocabulary of key words, especially when you need help getting the child to tune into what you are saying (e.g. “bath time” or “go car”).

We use these models in therapy to help parents learn to speak at the appropriate developmental level that matches the child’s capabilities. This leads to a lot more understanding and less frustration/ anger because the child understands what is being said to them. 29

Speech Therapy When considering a speech therapist to help support you in your child’s comprehension development I would strongly recommend that you find a developmental speech pathologist who specialises in ASD. If you would like to gain a deeper understanding of what I have touched on in this article you could also take a look at; www.connecttherapy.com/ workshops/awm to access my online workshops “Effective Speech Pathology...What Works and What Doesn’t" and my advanced workshop “The Step by Step Guide to Social and Communication Development”. In a nutshell Improving a child’s ability to be able to ‘comprehend’ their environment as well as the language of others is incredibly important. It helps the child to share greater meaning with others which leads to a happier, calmer, more connected and interested child. If we patiently target language therapy in a developmental fashion it takes the mystery out of intervention and then skills naturally unfold for the child.

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24-Hour Autism Hotline

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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. 31

SOUND THERAPY JEAN LOTH B.Ap. Sc. (O.T.), S.I.P.T. cert, Grad Dip Ed Studies (Learning Diff)

Anxiety: Is Sound Therapy the Solution? Melville based OT Jean Loth believes so.

Sound based intervention is being used to treat children with autism and sensory processing disorders. There are many programs available, all of which deliver modified music through headphones with varying duration protocols.

nervous system. It tends to reduce anxiety which is so common in children with autism. Andy (not his real name), came to us in our Sound for Life clinic before he was diagnosed with autism. He was five-years-old and in pre-primary at school. He had heightened anxiety, reacted severely to noise especially if it was unexpected. He was extremely fearful, disengaged, emotionally reactive and unable to settle at any activity. He was unable to engage with other children and his mother had to be with him at school due to the high level of anxiety.

The benefits of these programs include change in sensory sensitivity, anxiety, behavior, auditory processing and motor skills. Tw o f o r m s o f s o u n d - b a s e d intervention we use in our practice are the Integrated Listening Systems (iLs) and Therapeutic Listening. Therapeutic Listening is commonly delivered as a home program. It has air conduction headphones and was designed by Occupational Therapist Sheila Frick. It focuses on sensory processing.

He began the iLs clinicbased program, attending three times a week. This program was combined with Occupational Therapy and movement activity. .Liaison with the school by the Occupational Therapist resulted in visual timetables, more structure, a weighted lap bag and industrial ear plugs that Andy could manage himself.

More than 500 children have used Therapeutic Listening at Melville Occupational Therapy and Extra Lesson™ for Children, with positive results particularly for those with sensory processing and attention concerns. The Integrated Listening System is a clinic and home based program using bone conduction headphones. With these specialized headphones, sound is transmitted through bone by an additional speaker located in the middle of the headphones.

Slowly, Andy opened up while his family navigated its way through the process of his autism diagnosis. Andy’s improvement was consistent. His mother began to leave him at school by himself and his behaviour became more engaged. His play was less robotic and, with OT support, his play themes expanded. He could even manage

This appears to be better suited to children with autism due to the calming effect this has on the 32

with another child in the therapy room. Andy’s emotional and cognitive rigidity lessened and he was able to handle change and transitions better. He was able to settle and do activities where initially this was not possible. Auditory and tactile sensitivity reduced to the point where he no longer needed the ear plugs, except when the noise was extreme. His mother reported he was more confident especially with sport. The Listening Questionnaire which covered the areas of sensory motor, auditory/language, social/ emotional and organisation/attention showed behavioural concerns reduced by 26 per cent.

It also found that the changes in behaviors held after the therapy had been withdrawn, and that all of the children’s families and therapists noted a reduction to arousal and reactivity to sensory input.

The changes in Andy were reflected in a 2012 study sponsored by the Sensory Processing Institute for Research and Learning Foundation, also known as the Spiral Foundation. It looked into the outcomes of the iLs programs in relation to 1304 children with autism. This was followed by two studies to look at whether the changes held once the program ended. Pre and post measurements were recorded from the iLs trained therapists and from the parents . The results revealed significant changes in the areas of: • Social skills and emotional regulation, • Quality and quantity of atypical behaviors, • Number and severity of autistic behaviors and adaptive response, • Visual, fine and gross motor skills, listening skills.

Andy is now in Year One. He continues to have Occupational Therapy and began ABA post program. The iLs program has meant he needs less intervention and is a happy, adjusted boy managing the symptoms of autism. The reduction of his mother’s stress levels is palpable.

All children in the second and third studies had Occupational Therapy once a week or once a month alongside the listening home program. The authors concluded: “These three studies provide diverse evidence that the iLs is an effective intervention for children with autism and SPD.”

The biggest gain Andy has received from Integrated Listening has been the reduction in anxiety due to the calming of his sensory system. It has been a pure joy watching him blossom.

Jean%Loth Director Melville%Occupa4onal%Therapy% and%Extra%Lesson%for%Children melvilleotel@westnet.com.au Jean%Loth Gillian%Baker% Directors% Sound%for%Life soundforlife@westnet.com.au

Jean and Gillian

www.integratedlistening.com 33

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IS THIS THE BEST APP FOR CHILDREN WITH AUTISM

toby playpad AN Australian innovation is transforming autistic children's lives. TOBY Playpad is transforming the lives of children with autism as parents across the globe are using the new app to help teach their children basic cognitive, communication and social skills at home. TOBY Playpad was designed to support the learning needs of children with Autism Spectrum Disorder (ASD) and to provide support to parents, carers and practitioners.

TOBY is revolutionary new technology developed by a team of computer scientists led by Professor Svetha Venkatesh at Curtin University in Western Australia. The Australian Research Council and the Perth-based not-for-profit organisation Autism West provided funding to support Professor Venkatesh’s work. Silvana Gaglia, President of Autism West, said the technology had the potential to revolutionise therapy techniques and help families worldwide. "TOBY Playpad empowers parents and carers with children who have been diagnosed with ASD, providing them with tools to immediately commence therapy activities at home during the crucial early intervention period." Professor Venkatesh, now the Director of PRaDA – Pattern Recognition and Data Analytics - at Deakin University, said the program was not designed to replace one-on-one therapy but had brought cost-effective and evidence based therapy techniques into the home. This is particularly vital while children are on waiting lists to receive speech and occupational therapy and is also a useful way to complement therapy a child may be receiving at home. "The program is unique as it has its own curriculum based on developmental behaviours which help the child to learn more than 50 skills both on and off the iPad. TOBY then tracks a child’s progress through its user-friendly recording system and regularly updates goals and lesson plans based on their performance each day”. TOBY 2 is due to be released at the end of 2013 and will eventually add a further 95 skills.

TOBY Playpad is designed for children: With a diagnosis of Autism (ASD) or Pervasive Developmental Disorder – Not Otherwise Specified (PDDNOS). Who may or may not have an Intellectual Disability or Developmental Delay. Communicating mostly through gestures, behaviours (such as hand leading, bringing items), sounds, single words or early two-word phrases. Able to sit at a table for a short period of time (up to 10 minutes at a time) and/or has some familiarity with a computer. Needing help with early social and play activities. Children without an autism spectrum disorder and who are in the early phases of learning may also benefit from TOBY’s program. This includes children with a developmental delay or language disorder. TOBY’s activities can be easily transferred into a child’s everyday life and can be used in a range of settings: Learning can easily occur, for example, within the home, at the park, at grandparent’s houses, or in the car – any settings where your child is able to engage in either on-iPad or offiPad activities. Therapists can use TOBY to complement current intervention goals. It is especially helpful in guiding parents with homebased and community-based activities to help generalize a range of important learning skills. Teachers can use TOBY in classroom and playground settings to help individuals and groups of children achieve learning success.

A typical day with TOBY might include time on the iPad for a total of 20 minutes, and a similar amount of time doing other TOBY-directed tasks that weave into daily routines and the child’s play interests. Based on TOBY’s recommendations, parents choose tasks to complete with their child each day and based on the child’s results, TOBY will generate suggestions for the following day’s activities. TOBY’s activities can be easily transferred into a child’s everyday life and can be used in a range of settings: Learning can easily occur, for example, within the home, at the park, at grandparent’s houses, or in the car – any settings where your child is able to engage in either oniPad or off-iPad activities. Therapists can use TOBY to complement current intervention goals. It is especially helpful in guiding parents with home-based and community-based activities to help generalize a range of important learning skills.

Create a plan to achieve goals Each day TOBY presents a choice of tasks drawn from a curriculum tree based on how your child has progressed with pre-requisite tasks. By having a dynamic curriculum, TOBY is able to adapt to your child’s learning and developmental needs by choosing goals and adjusting the difficulty of tasks. Based on TOBY’s recommendations you choose what tasks you want to complete each day, and based on your child’s results, TOBY will generate suggestions for the following day’s activities.

Learn through activities TOBY’s curriculum covers language, sensory, imitation and social skills. A typical day with TOBY might include iPad time of 20 minutes, and a similar amount of time off the iPad doing TOBYdirected tasks that weave into your daily routines and your child’s play interests. The amount of activities you do is guided by you and your child.

Teachers can use TOBY in classroom and playground settings to help individuals and groups of children achieve learning success. CLICK HERE FOR TOBY Playpad on iTunes for $29.99.

Rewards TOBY comes with a built-in reward system that reinforces learning. As your child progresses through tasks they collect tokens that can be spent on simple fun activities such as painting, balloon and bubble popping, fireworks, and videos chosen by the parent. 37

TOBY FAMILY

by Rhona and Clay Bolger

When we started using TOBY, our daughter Alyssa was six and our son Lachlan five. The first thing we were struck by was the range of off-iPad activities, or NET (Natural Environment Tasks) activities; there are over 300 to complete. Each day we could access a list of therapy goals and decide which ones we could attempt to reach. We loved how easily we could adapt TOBY's NET activities into our day-to-day routine without the kids really noticing that they were having a therapy session. There were strategies for achieving goals while they were in the bath, or brushing their teeth, or eating at the dinner table.

There are four main areas that the TOBY Playpad focuses on: Imitation; Sensory discrimination; Joint attention; and Language. As we worked through the activities, we could see the strengths and weaknesses of both children in these areas. It was a great tool to see how far they had come, and also to see what we needed to spend more time working on.

If we required any assistance, it was simple to contact the TOBY team either through email or Facebook.

Each task's outcome was logged by either being mastered, needing prompts or not completed. TOBY showed us how to prompt the kids, and we could record if we needed to give them one, two or three prompts. There was no guess-work involved; everything was laid out in black and white.

It's very easy to take with us wherever we go as well, as it is just on an iPad. As long as we could access Wi-Fi at some point, we could still upload the data as the kids completed activities. We even took TOBY with us on holiday. We canâ&#x20AC;&#x2122;t wait for TOBY 2 to come out aimed at children aged between six and 12.years.

Waiting lists for some treatments are now 12 months or more. Having TOBY to bridge the gap will help parents of newly diagnosed children with autism feel that they are moving their kids forward.

INDEPENDENT REVIEW

MERRYN AFFLECK

One of the main areas of focus of my advocacy over the past 20 years has been to strengthen parents.

Executive Officer at Autism Northern Territories reviews the Toby Playpad

Too often after The Diagnosis, the focus is all on the child. The parent’s role almost becomes that of a chauffeur, or personal assistant, ensuring that all appointments are in place and that our child makes each and every one. As parents, we follow the lead of the professionals who now are such a major part of our lives and we focus all our attention away from ourselves. By the time our child is diagnosed we have often lost all confidence in ourselves as parents. Let’s face it, nothing we ever did worked and we were constantly confronted by subtle (and sometimes overt) messages from everyone that we were terrible parents. So my advocacy has always been, and will continue to be, to support the parents and to find

ways to help them regain that confidence. And I believe that the TOBY Playpad APP is a wonderful way to start.

This was made even clearer to me when I travelled to Perth for a 1 day TOBY Playpad training hosted by Autism West. Among the other professionals in the room was a young couple who had been successfully using TOBY with their young son. Yes, they had all the data created by TOBY to show how his various skills had improved dramatically, but that is not what caught my eye. Instead, I was watching how these parents confidently interacted with us all, used the professional vernacular with ease, and provided the instructor with “real life” examples for various aspects of the program. I asked them about how the successful use of TOBY had 39

personally affected them, and their smiles spoke volumes. They opened up about how scared and unsure they had been for so long, how intimidated they had felt when meeting with professionals, and how “stupid” they sounded. Naturally, this often meant that they did not contribute to discussions and they actually felt that many professionals preferred that! Yet after using TOBY and seeing for themselves the growth and progress of their child, they found themselves filled with a sense of purpose and enthusiasm. They found they actually understood what the wonderful professionals were saying to them and that they were able to become much more active in those discussions and subsequent decisions. They were, indeed, part of the team. I believe that ASD children AND parents can gain so very much from using TOBY. Merryn Affleck www.autismnt.org.au

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eat play Learn

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

Do you feel overwhelmed and confused when it comes to making diet changes to support your children?

Overwhelmed?

Our resident nutritionist Paula Tazzyman offers some simple solutions to help you and your family.

PAULA TAZZYMAN Accredited Practicing Dietitian BSc Ma Nut & Diet (Sydney Uni)

Here are Paula’s 10 simple, yet powerful, steps you can take to optimise the nutritional wellness of your child and begin to reduce some of the issues your child may be facing.

1.Avoid artificial colours.

2. Avoid natural colour, Annato 160b (yellow)

Keep it white in colour. Research from Southampton University have shown that the below colours caused children to become hyperactive. The Food Intolerance Network in Australia has detected 1154 products listing at least one of six controversial bright red or yellow added colours on labels.

Found in custard, yoghurt, ice cream, cheeses, cereals, juice. Annato has been linked to head banging, irritability, restlessness, in-attention and sleep disturbance. The use of 160 b is on the raise as manufactures move to promote the “no artificial colours” on their labels.

The highest concentrations of artificial colours were found in savoury snack foods, ice-cream/ ice blocks, confectionery, cakes, muffins and pies.

3. Avoid artificial flavours. Vanilla flavour is the safest. Buy plain vanilla flavoured options. For example Kettles plain chips and Red Rock Deli salt and garlic are additive free options for treats.

These colours are banned or warnings are in place in the UK and Europe but not in Australia. 42

Do your best to avoid: E102-tartrazine yellow E104-quinoline yellow E110-sunset yellow E122-carmoisine/azorubine E124-ponceau/brilliant scarlet E129-allura red

4.Avoid preservative 282 Found in bread, wraps, crumpets and other bread products. Proprianates 280-283 are all problematic. Whey powder is a hidden way to add 282 and not list it on the label. Aggression is a common issue with 282. Bakers Delight, Banjo and Brumby’s bakery have preservative free breads, as do the in-house bakeries at Coles and Woolworth.

9. Feed the brain healthy fats. The brain is about 60 per cent fat so it is vital to nourish it with “real” not processed fats. Avoid trans fats and hydrogenated vegetable oils found in processed and take away foods. Omega 3 fats from oily fish are key to a healthy brain! Be sure to choose small fish to avoid mercury. Walnuts, pecan nuts, flax seeds/oil, dark green leafy vegetables also contribute to Omega 3 fats.

5. Avoid flavour enhancer MSG-621 and other glutamates 620-625. Hydrolysed vegetable proteins, textured vegetables protein and yeast extract are all hidden glutamates. Found in the sachets of two minute noodles, vegemite, Shape biscuits, flavoured crisps, stock cubes, packet soups etc.

10. Feed the brain protein rich foods. Most of my clients eat lots of carbs (bread, pasta, rice) and little protein. Research has shown that a protein rich breakfast will wake up the brain for better concentration. Protein is also vital to make brain chemicals, hormones, for muscles tone, growth and development. If possible choose organic eggs/chicken, organic grass fed meats, wild fish. Quinoa, pulses, sprouts, nuts and seeds are great plant protein sources

6. Avoid processed meatsDevon, meat pies, sausages, salami. Even ham off the bone has been rubbed with nitrates/ nitrites (249-252). Roast meats make for great luncheon meats. 7. Avoid preservative 211, sodium benzoate. Research from Southampton University also showed that the preservative 211, caused hyperactivity in children. All benzoate's are problematic so do your best to avoid numbers 210-213 (benzoic acid, sodium, potassium & calcium benzoates). Found in juices, soft drinks, cordials, syrups, medications, cosmetics etc.

In Wellness Paula xx www.paulatazzyman.com.au www.facebook.com/pages/Paula-TazzymanDietitian/180866515360313

8. Change to A2 milk and A2 yoghurt (Jalna). A2 milk protein is much easier to digest. More on www.paulatazzyman.com.au

AVOID THESE ADDITIVES COLOURS 102,104,107,110,122,123,124,127 128,129,132,133,142,151,155 Natural<colour<160b<(anna@o) SYNTHETIC-ANTIOXIDANTS Gallates<310C312 TBHQ,<BHA,<BHT<319C321<

PRESERVATIVES Sorbates<200C203 Benzoates<210C213 Sulphites<220C228 Nitrates,<nitrites<249C252 Propionates<280C283

FLAVOUR-ENHANCERS Glutamates<iMSG<620C625 RibonucleoPdes<627,<631,<635 Hydrolysed<Vegetable<Protein< (HVP)< Source:<www.fedup.com.au

S T A E R T Y Z Z TA

mer m u s r o f l o o c g Somethin

Tazzy Treats Rice Milk “ice-cream” low in natural chemicals, gluten and dairy free Ingredients 3 cups rice milk 1/3 cup rice bran oil 1/2 cup castor sugar 1 teaspoon vanilla essence 1/3 cup carob powder

Tazzy Treats

Directions

Easy Raspberry “ice cream” – gluten & dairy free

Mix all ingredients and pour into tray to freeze for one hour. Transfer mixture into cold bowl and beat with electric mixer for three minutes or until frothy.

Ingredients 300 grams frozen raspberries (frozen plums also work well) 1 egg white, ideally organic 70 grams of castor sugar, use as little as needed

Return mixture to set and freeze for a few hours.

Directions Place frozen raspberries in the blender. Mix until they look like breadcrumbs. Whisk egg whites until it is foamy but has not formed peaks. Combine the egg white and bits of raspberries and blend together. Slowly add the sugar until all mixed. Scrape into 1 Litre container and pop in the freezer until frozen or pour into icy pole moulds. 44

Tazzy Treats Cashew Pear “ice cream” Ingredients 1 cup raw cashews 1 very ripe peeled large pear chopped 2 tablespoons water or rice milk 1 teaspoon vanilla essence

Directions Blend cashews until they are a flour-like consistency. Add the pear, vanilla and water/ rice milk and blend until creamy, adding more liquid if needed. Freeze for a couple of hours before serving. It sets hard so you may want to leave it out for 10 minutes or so before serving. Enjoy Paula xx

Paula’s Wellness Tips e-Handbook It has been a treat to have spent the last six months compiling an easy to read reference for families to support their nutritional health I have gathered all my knowledge and put together"Wellness Tips: A Practical Guide For Family Health" to support many of the common concerns families grapple with; concentration, constipation, mental health issues, behaviour, sleep, digestive distress, food intolerance and food additives are all covered. This e-Handbook accompanies the free “Food for the Brain” report on my website, which covers nutritional deficiencies that influence brain function concentration and learning. There are also many free blogs and video post that your clients can access. This project has being a labour of love for me. My aim is to support as many families as I can especially those that may not be able to see me privately. It is my sincere hope that you and your family will benefit from my insights.

The endless hours that have gone into this document have all been made worthwhile by comments like this:

"I have just finished reading your e-book. Thank you so, so much for writing it. It contains so much information and helpful advice, that as parents we usually aren't given. When reading about certain deficiencies I just gasped and went OMG that's ME, others a light came on and I thought of my boy!!! After a child has just been diagnosed as having ASD or another developmental delay, the paediatrition should hand them the child’s report and a copy of your book. That way every mother can have a copy, which will give her the information necessary to raise a happy, healthy little tot! Thank you Paula " Hayley.

To purchase Paula Tazzyman’s e-Handbook go to: www.paulatazzyman.com.au

Gut and Psychology Syndrome (GAP Syndrome or GAPS)™ by Dr. N. Campbell-McBride, MD

One of the diets often recommended for those on the autism spectrum is GAPS created by Dr. Natasha CampbellMcBride

Most parents of autistic children can clearly recall that traumatic moment of the diagnosis of “Autism” being announced to them by a doctor followed by the statement "There is nothing that can be done.” Being a doctor myself, I have to say that your doctor is wrong; there is a lot that can be done. I would even go further, depending on your commitment and certain circumstances, you have a good chance of bringing your child as close as possible to normality. Thousands of autistic children across the globe, who are appropriately treated and educated, become almost indistinguishable from their typically-developing (normal) peers. My own son was diagnosed severely autistic at the age of three. Now, he has fully recovered and is leading a normal life. In my clinic in Cambridge, in England, I work with hundreds of autistic children and adults. My personal and professional involvement with autism has been my best education in how to treat this disorder effectively.

Treating autism is not an easy task. It takes years of continuous effort and commitment. But, being a parent myself, I can tell you that it is one of the most rewarding experiences on Earth. In my book Gut and Psychology Syndrome. Natural Treatment for Autism, ADHD, Dyslexia, Dyspraxia, Depression and Schizophrenia I would like to share with you what I strongly believe to be the appropriate treatment for an autistic child.

bacteria have to predominate to keep us healthy physically and mentally. Their role in our health is so monumental, that we simply cannot afford to ignore them. We will talk in detail about the child’s gut flora later. Now let us come back to the source of the child’s gut flora – the parents.

What is a typical scenario I see in clinical practice?

A typical modern mother was probably not breast fed when she was a baby, because she was born in 70s or 80s when breast-feeding went out of fashion. Why is it important? Because it is well known now that bottle fed babies develop completely different gut flora to the breast fed babies. This compromised gut flora in a bottle fed baby later on predisposes her to many health problems. Having acquired compromised gut flora from the start, a typical modern mum had quite a few courses of antibiotics in her childhood and youth for various infections.

Before examining the patient it is very important to look at the health history of the parents. Whenever the parents are mentioned, people immediately think about genetics. However, apart from genetics there is something very important the parents, mother in particular, pass to their child: their unique gut micro-flora. Not many people know that an adult on average carries 2-3 kg of bacteria in the gut. There are more cells in that microbial mass than there are cells in an entire human body. It is a highly organised microworld, where certain species of 48

After studying hundreds of cases of autism in children and adults, a typical health picture of these children’s mums has emerged.

Antibiotics have a serious, damaging effect on gut flora, because they wipe out the beneficial strains of bacteria in the gut. At the age of 16 and sometimes even earlier, the modern mum was put on a contraceptive pill, which she took for quite a few years before starting a family. Contraceptive pills have a devastating effect on the beneficial (good) bacteria in the gut. One of the major functions of the good bacteria in the gut flora is controlling about 500 different species of pathogenic (bad) and opportunistic microbes. When the beneficial bacteria get destroyed the opportunists get a special chance to grow into large colonies and occupy large areas of the digestive tract. A modern diet of processed and fast foods provides perfect nourishment for these pathogens. That is a typical diet a modern mum had as a child and a young adult. As a result of all these factors, a modern mum has seriously compromised gut flora by the time she is ready to have children. Clinical signs of gut dysbiosis (abnormal gut flora) are present in almost 100 per

cent of mothers of children with autism and other neurological and psychiatric conditions. Why are we talking about mother’s gut flora? Because her baby is born with a sterile gut. In the first 20 or so days of life the baby’s virgin gut surface gets populated by a mixture of microbes. This is the child’s gut flora, which will have a tremendous effect on this child’s health for the rest of his/her life. Where does this gut flora come from? Mainly from the mother. So, whatever microbial flora the mother has she would pass to her newborn child. Gut flora is something we do not think much about. And yet the number of functions the gut flora fulfils is so vital for us that if some day our digestive tract got sterilised we probably would not survive. The first and very important function is appropriate digestion and absorption of food. If a child does not acquire normal balanced gut flora, then the child will not digest and absorb foods properly, developing multiple nutritional deficiencies. Apart from taking a vital part in nourishing the body, beneficial bacteria in the gut act as the housekeepers for the digestive tract. They coat the entire surface

of the gut protecting it from invaders and toxins by providing a natural barrier and producing a lot of anti-bacterial, anti-viral and anti-fungal substances. At the same time they provide the gut lining with nourishment. It is no surprise that when the gut flora is abnormal the digestive tract itself cannot be healthy. Indeed, most patients with autistic spectrum disorders present with digestive problems. In many cases these problems are severe enough for the parents to talk about them first. In some cases they may not be severe, but when asked direct questions the parents describe that their child never had normal stool, that their child suffered from colic as a baby and that tummy pains and flatulence are a common part of the picture. In those cases where these children have been examined by gastroenterologists, inflammatory process in the gut was found along with faecal compaction and an over-spill syndrome. They found an

inflammatory condition in the bowel of autistic children, which they have named ‘Autistic Enterocolitis’. Well functioning gut flora is the right hand of our immune system. A baby is born with an immature immune system. Establishment of healthy balanced gut flora in the first few days of life plays a crucial role in appropriate maturation of the immune system. If the baby does not acquire appropriate gut flora then the baby is left immune compromised. The result is lots of infections followed by lots of courses of antibiotics, which damage the child’s gut flora and immune system even further. At the same time, in the first two years of life, the child receives a lot of vaccinations. A child with compromised immune system does not react to vaccinations in a predicted way. In many cases vaccines deepen the damage to the immune system and provide a source of chronic persistent viral infections and autoimmune problems in these children. The autistic child who we are talking about, did not get normal gut flora from the start and then got it damaged even further by repeated courses of antibiotics and vaccinations. As a result

these children commonly suffer from digestive problems, allergies, asthma and eczema. But apart from that, in autistic children and adults, something even more terrible happens. Without control of the beneficial bacteria, different opportunistic and pathogenic bacteria, viruses and fungi have a good chance to occupy large territories in the digestive tract and grow large colonies. These pathogenic microbes start digesting food in their own way producing large amounts of various toxic substances which get absorbed into the blood stream, carried to the brain and cross the blood/ brain barrier.

“Knowledge is power” Due to the absence or greatly reduced numbers of beneficial bacteria in the gut flora, the child’s digestive system, instead of being a source of nourishment, becomes a major source of toxicity in the body.

In my book Gut and Psychology Syndrome. Natural Treatment for Autism, ADHD, Dyslexia, Dyspraxia, Depression and Schizophrenia we look in great detail at what particular toxins have been found in autistic children and adults and how they make these children and adults autistic. The toxicity, which is produced by the abnormal microbial mass in the digestive tract of the child, establishes a link between the gut and the brain. That is why I named this condition: the ‘Gut and Psychology Syndrome (GAP Syndrome)™’. Patients with GAP Syndrome fall in the gap – the gap in our medical knowledge. As a result they do not receive an appropriate treatment. The book on GAP Syndrome explains how and why autism develops and how to treat it using a sound nutritional protocol. The treatment is completely natural and can be implemented at home. It is a selfhelp book with a comprehensive recipe section and is written in easy to understand language. Knowledge is power. This book gives the parents the power to help their child. You can learn more on www.gaps.me and www.Doctor-Natasha.com

The GAPS Journey is made easier with the support of others. Next month in AWM we take you through some practical steps to make GAPS work for your family. And if you are using GAPS send us an email and let us know how you are going. support@magswest.com 50

Gemmill Gemmil GemmillGemmill

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Developing Language through Books Catherine Crestani and Diana Wolf

As we’ve discussed in Autism World Magazine, books are a great way to promote language in children with ASD. Once that you have your child engaging with books we need to add in the words and improve their understanding of the world. How you do this will depend on your child’s level of communication. Non-verbal children For children who are not talking yet, we want to help them start using words and label pictures. Using simple photo or picture books you can provide a basis for repetition and learning. Use one to two words at most to talk about the picture and then move on. Don’t forget to follow your child’s lead. If they really like a picture stay with that picture and keep talking about it. For example, if you have a picture of a dog, you can say ‘wow dog’, ‘happy dog’, ‘silly dog’, ‘dirty dog’ and so forth. In doing this your child has heard dog many times and is more likely to understand and then use the word.

Children who are starting to talk For children who are starting to talk, use books that have more content and more repetitive/ predictable story lines (such as ‘That’s not my…). You can start teaching your child new vocabulary by pointing to the picture (or letting them point) and using a new word. For example, if they are pointing to a car, you might tell them the type of car it is, such as a police car, taxi, race car and so forth. This helps build their understanding of the world, and further develops their vocabulary. You can also start building on their ability to respond to questions by asking simple ‘where’ and ‘what’ questions. Flap books can be great for this. For example you might ask ‘Where is Spot?’ and encourage your child to lift the flap and say ‘Here he is’. Children who are talking For children who are verbal, you can begin to expand on a range of higher language skills. This can include answering questions,

predicting what will happen next and improving their understanding of stories (which is very important for developing reading comprehension skills). Books that are useful for this are fairy tales, book series (such as The Very Cranky Bear, The Things I Love), The Very Hungry Caterpillar. To encourage answering questions, you can ask ‘where’ did it happen, ‘when’ did it happen (e.g. night versus day), ‘why’ something happened, ‘how’ did it happen and ‘how’ the characters felt. This will also assist with their comprehension of the story. In terms of predicting what will happen, this can be done in two ways. If it is a familiar book, see if the child can remember what will happen next. Encourage your child to try and complete and/or act out the story. This will assist with their pretend play skills as well (particularly as they have a script in the book). If the book is unfamiliar, you can ask your child to guess what will happen next by using clues within the story.

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

www.nsls.com.au 54

“our cause is a work in progress” 56

Strength and Hope Deborah Cant on Autism Support

South West Autism Network (SWAN) began in 2009, shortly after my daughter Grace was diagnosed with Asperger Syndrome. Having recently moved to Dunsborough from Perth Western Australia and feeling isolated by geography and circumstance, I asked our Local Area Coordinator from Disability Services Commission if we could meet another family in the area with a child on the Autism Spectrum. I was introduced to Tish Merifield whose son Jarvis was the same age as Grace.

Through this friendship SWAN was born and together we have shared the journey of bringing this support network to life! Our first catch-up was held at Occyâ&#x20AC;&#x2122;s Brewery where five nervous parents came together to have a drink and be introduced to each other. Today, our numbers have swelled to over 200 parents, children, siblings and industry professional. Our members meet regularly in relaxed and friendly environments; in a variety of locations hosted by volunteers in Bunbury, Busselton, Dunsborough and Margaret River.

Get-togethers are often during school hours, however we also have family catch-ups on weekends and school holidays to provide the children with much needed social opportunities with like-minded peers. The odd 'Mumsâ&#x20AC;&#x2122; Night Out' has also been very popular. In researching the viability of SWAN I had the opportunity to travel to Kalgoorlie and meet some inspiring people, who banded together to open Full Circle, an early intervention centre providing therapy for young children living in the Goldfields.

Till that time local families had no option but to travel to Perth to access service providers funded through the Federal Government's Helping Children with Autism initiative (FaHCSIA). I also met Silvana Gaglia from Autism West, who inspired me with her story of a support group which, in-time, blossomed into an extraordinary organisation providing an invaluable service to families of schoolage children in the Perth Metropolitan area. The relationship between SWAN and Autism West has provided us with the opportunity to learn and be

guided by an organisation who pioneered similar change in the metropolitan area, and the means to bring their initiatives to our region. In 2013, we piloted two of Autism Westâ&#x20AC;&#x2122;s social skills programs in Busselton. Kids Club, for children aged 8-12 years and YES (Youths Engaging Successfully) for teens aged 13-17 years. These have been very popular; they highlight the need for improved learning opportunities for the children in the South West. Plans to increase Respite opportunities for families are ongoing, as is assisting families find appropriate 58

funding and services that may be available through other providers in the region. As a self-funded, not-for-profit organisation, we rely heavily on the passion and commitment of our members and volunteers. In partnership with Autism West and the help of our local Disability Service Commission we hope SWAN continues to support many more families well into the future. It is our dream that all families touched by Autism in the South West (or any regional area) receive support and services for their family in whatever form each individual may require. As we approach our fourth year, our cause is a work in progress and we look forward to the journey ahead.

â&#x20AC;&#x153;Jack is going to be the best he can be and that makes me the proudest mum in the whole worldâ&#x20AC;? 59

Jack and Liam by Erin Yates

Our family's autism journey began back in 2008. Jack was officially diagnosed at 18 months. He wasn't meeting his milestones and didn't speak his first word until three years of age, well in to his early intervention program. He lined things up, colour coordinated things, liked sitting in the bath under cold taps for minutes at a time, walked around flicking lights on and off, flapped his hands and tip toed, didn't like to be looked at or talked to, constantly screamed to get attention or have needs met, disliked too much noise and bright lights, woke up numerous times during the night distressed, ate limited foods and the list went on.

We had such a great start to his program with the outstanding help from his lovely therapy assistant. We started speech therapy prior to any diagnosis and occupational therapy not long after this. It took months of organising, waiting and pushing to get all the services we required, and to learn and find out what was available and what we needed to help Jack. The South West region had, and still has, very limited services with such long wait lists, so we were extremely lucky. For a long time I blamed myself for Jack's Autism. When he was diagnosed I was already pregnant with our second son Liam and my 60

husband Ryan worked away for our own haulage business. He was away four weeks at a time followed by one week at home. I had very little family or friend support and I was at breaking point dealing with it all on my own. For a year everything got on top of me, I felt alone with two kids under three and trying to keep a business and relationship together as Ryan and I didn't see eye to eye on the diagnosis. With some time to reflect on everything up until that point in my life, I finally realised what was most important. I had to focus on my children from then on and I needed to put in 110 per cent of myself

“look for the

positives”

to find out and learn as much as I could about Autism.

since my first meeting back in 2008.

During 2007/08, when Ryan and I started our business, our new accountant noticed some of Jack’s behaviours, his lack of speech and socialisation skills. He asked if we were seeing any specialist paediatricians for Jack. It felt good to know someone else was seeing exactly what I saw. After a long talk, we discovered he and his wife had two autistic boys. Not long after this I was put in touch with a group of autism families who met up regularly. There have been various catch-ups since in different places in the South West.

Without these lovely families whom I am so lucky to have met and call good friends, I am not sure what path our lives may have taken, but I know they are people we will be connected to for life. Today Jack still struggles from time to time with various issues. These will never go away and are constantly changing with age, but we now have the tools to deal with this together.

South West Autism Network (SWAN) has grown so much

Jack is attending the same school in Year One along with his brother Liam who is in Kindy. Liam has also been diagnosed with autism. The only piece of advice I can give to any parents is to look for the positives. I know wherever life leads Jack he is 61

going to be the best he can be and that makes me the proudest mum in the whole world. With love and thanks to all who were along for our journey; South West Autism Network (All the lovely people for their support), my family (Ryan, Liam, Jack, Nana and Granddad), Kath Olsen (Jack's special Nana), Sue Jackman (Jack's first & unforgettable therapy assistant), Rachel Ramm (Speech Pathologist), Monica McGrath (Occupation Therapist), Brooke Purslowe & Dr Felicity Adams (DSC & Child Matters Clinical Psychologists), Grant & Nick Avery, Deb Cant, Rosemary Kelman (Jack's therapy assistant 11/12 School), Ange Brown (Jack's class aide).

Erin Yates

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18 + 1

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

The World of Work

by Chantal Sicile-Kira

Preparing, planning and creative thinking about employment for your child or student on the spectrum,

many families. Autism World Magazine hopes to answer some

Making a DiďŹ&#x20AC;erence by Iain Croft

of your concerns in our 18 PLUS Section.

Why Westcare Industries are different.

Word Power by Malcolm Mayfield

Overwhelm, its causes and the impact that it has on individuals and on the people with whom the individual associates professionally or personally

Preparing ASD Youths for the World of Work Part Four: Self Employment as an Option

By(Chantal(Sicile^Kira 65

Chantal Sicile-Kira is a leader in the field of autism, adolescence and transition to adulthood, an international speaker and an award-winning author of five books. Having worked first worked with individuals with autism in California, and then raised her son Jeremy in three different countries gives her a perspective few in the field have. Recently Chantal founded AutismCollege.com to provide practical information and training for parents and educators. Her next series of training on adolescence and autism will take place online More information here: autismcollege.com/? p=1697 Although I would encourage my son Jeremy to try an employment opportunity that seems like a good fit, I am not holding my breath waiting for that job to show up on the horizon. I am not convinced that that much has changed since 2002 in the job market in regards to hiring disabled people, and certainly with all the neurotypicals now jobless, I donâ&#x20AC;&#x2122;t anticipate a huge rush of employers looking to hire my son. I became interested in the concept of self-employment or micro-enterprise when Jeremy was not offered any work experiences during his first few years of high school, about five years ago. The workability person at the time felt that Jeremy was not ready for any of the job options she had in the community. His teacher, however, felt everyone, including Jeremy, had potential, and was open to creating a self-employment experience under workability. At that time, Jeremy could not communicate as readily as he can now, and so we had to come up with ideas based on observations that people who knew Jeremy made about his strengths and weaknesses, his likes and dislikes, and then ask him yes or no questions.

Jeremy at work

I had heard of people with developmental disabilities having their own business.

When the opportunity came, I attended a workshop on the process and how it could work, and it made sense to me for someone like Jeremy. It was clear that if workability was telling me there was not a work experience opportunity for Jeremy, I was going to have to create something for him to learn “on the job” skills.

that if he could not do all aspects of his job, he had to pay someone else to do the parts he could not. In reality, it is these kinds of business lessons all neurotypical teens should be learning in the current economy. That being said, self-employment is not for everyone and necessitates a business support team. The business support team can be made up of a teacher or parent, a paraprofessional, a mentor , a friend, someone who has business experience. Each person brings their knowledge to the team. The business team helps to advise in areas the person needs help with, and also does parts of the business the person cannot, just as in all businesses (i.e. I pay a tech guy to take care of my website because I can’t). There are free resources, available online for those who are not experienced in starting up a business.

Jeremy’s teacher came up with the idea of starting a sandwich delivery service for the teachers, based on Jeremy’s strengths and likes, and the fact that by the end of the week, the teachers were sick of the on-site lunch option, and so there was a need for such a service. Jeremy’s second experience was providing a needed product (selling flowers to peers at school where no flowers were available on campus). By actually doing these businesses, Jeremy learned valuable business lessons. These lessons were complimented by general education classes he took those semesters, such as a class on marketing and another one on economics. For his class projects he had to write papers on how he applied those principles to his job. Some of these lessons were: the cost of doing business; the difference between a profit and a loss; how marketing, location and price affected the numbers of customers he was able to attract and keep. Jeremy also learned

Looking at self employment as an option sometimes leads to an actual job. The process of discovering a person’s strengths and weaknesses, can lead to discovering areas of traditional employment that had not been considered for that person previously. Sometimes it leads to a job offer from a business in the local community that the person had visited to get more information about his area of interest.

In Conclusion:

Recently I discovered that Jeremy was painting portraits of people in his dreams. He started dictating his dreams to me and his support staff and decided he wanted to try and paint his dreams in real life. Now, he is paid to paint his dreams. Here below are some examples of the portraits he has painted.

Teaching children and teens on the spectrum needed life skills is a necessary preparation to life as a money-earning adult. Analyzing the needs of both the potential employee and employer, as well as looking at the different options in employment structures is necessary to ensuring a good match. Finding a mentor can help with a successful transition to gainful employment.

Visit jeremysvision.com for more information.

My Dad Last night I dreamt that I greatly painted my great Dad. It was kind of green and red. It showed my beautiful Dadâ&#x20AC;&#x2122;s calm with underlying unhappiness with life's upsets. The finger strokes are the tears he cannot shed.

Matt and His Beautiful Colors Truly I had a frankly gorgeous dream about nice Matt and his greatly wonderful character, represented by really nice colors of very bright green, blue, yellow and purple. The colors reflect the calm yet exciting personality kind Matt has. Justly he is very beautiful. Kindly he needs more love to conquer his heart. Truly she must be very special to be a match for him. The painting shows the reality of Matt searching for his true love.

Chantal(Sicile^Kira( Author: A Full Life With Autism ; Autism Spectrum Disorders; Adolescents on the Autism Spectrum; Autism Life Skills; What is Autism? Understanding Life with Autism or Asperger's.

I’m$William$and$I$have$worked$in$the$ printing$department$for$seven$years.$ I$enjoy$:inishing$off$the$:iles,$ collating$the$inserts$and$counting. William at work at Westcare

Working to make a difference in WA Westcare(Industries(in(Perth(are( different. They#have#been#providing#professional# print,#food#packaging,#box#making,# safety#garment#manufacturing#and# accommodation#services#for#over#60# years.# However,#it#isn’t#just#the#quality#and# diversity#of#their#product#and#service# offering#that#makes#Westcare#unique.# It’s#their#workforce#of#people#with#a# disability#that#has#driven,#and# continues#to#drive,#the#organisation’s# commercial#success. “Of#the#150#company#employees,#90# have#a#disability,”#CEO#John#Mitchell# said,#“and#we#are#looking#to#hire# another#20#people.” Part#of#the#notDforDproIit#Westcare# Incorporated,#Westcare#Industries#is#a# commercial#enterprise#that#turns#a# very#healthy#proIit.#They#have#been# training#and#offering#longDterm# employment#to#people#with#a#disability# since#its#inception#in#1947 As#an#integrated#business,#Westcare#is# Iirmly#established#as#a#oneDstop# production,#packaging#and#delivery# shop.##Moreover,#the#company#is# equally#well#recognised#and#respected#

by#the#broader#community#of#Western# Australia#for#helping#to#improve#the# lives#of#people#with#disabilities# through#quality#employment. To#some,#providing#training#and# employment#opportunities#for#people# with#disabilities#may#seem#noble,#but#a# little#incongruous#with#running#a# proIitable#and#respected#commercial# enterprise,#especially#in#such#a#timeD critical#and#costDconscious# marketplace.#But#as#John#Mitchell# explains#the#success#of#Westcare’s# integrated;#communityDfocused# approach#speaks#for#itself. “We’ve#been#providing#innovative#and# costDeffective#printing,#safety,#box#and# food#packaging#solutions#for#business# customers#for#many#years.#In#today’s# commercial#environment#you#don’t# survive#for#long#without#offering# highly#competitive#and#innovative# solutions,”#John#says. “We#are#talking#meaningful#work,#real# professional,#paid#employment.#The# people#we#train#and#employ#deliver# products#and#services#that#are#second# to#none,#at#a#very#competitive#price,# making#it#a#winDwin#situation#for# everyone#–#clients,#employees#and,# therefore,#the#broader#community.”

Westcare Head Office 75 Carrington St, Nedlands. +61 (0) 8 6389 4100

Westcare Bassendean 28 Hanwell Way, Bassendean

www.westcare.com.au info@westcare.com.au

Sales: Neil Douglas +61 (0) 419 965 850

Tea break with Hal Joske Which division of Westcare do you work? I work within the printing department, threading tags using a specialised machine. How long have you been with Westcare? I have had the pleasure of working at Westcare for 29 years in various roles. I commenced in the box department in early 1979 then moved into printing in October 1980. What do you enjoy most about working here? I love the people – they are very friendly to work alongside and we have a strong sense of teamwork. My long term goal is to stay with Westcare for another 29 years!

Job Opportunities To find out more about westcare employment contact HR Manager Bruce Bowe +61 (0) 8 6389 4100

Future employment:

part 2 Overwhelm

Malcolm Mayfield

Managing Director Autism STAR Pty. Ltd

In particular I suggested that the article failed to address the causes behind the above observations, which in my opinion included:

Last month I explored two findings from an article posted on the News Medical website in September 20132:

• Overwhelm; • Fear of getting it wrong; • Lack of self-belief; • Society beliefs and perceptions about autism; and • Lack of experience and training.

young adults with autism spectrum disorders have worse employment outcomes in the first few years after high school than do peers who have other types of disabilities iii; and

This month’s 18+ article focusses on overwhelm, its causes and the impact that it has on individuals and on the people with whom the individual associates professionally or personally. Strategies will also be suggested to assist in successfully managing the overwhelm state.

young adults on the autism spectrum were less likely to have ever lived independently since leaving high school, compared to their peers with other disabilities iiii.

Picture courtesy: Danny O’Connor http://docart.bigcartel.com

Firstly, overwhelm is a natural state designed to protect the body or the conscious mind, much akin to a pressure valve. In 1956, George A. Miller theorised that the conscious mind could only take in 7±2 pieces of information at one time before recall efficiency started to drop. There are many who believe that exceeding Miller’s “Magic Number” will induce an overwhelm state commonly referred to as information overload.

When a new topic is introduced, it has to be linked to pre-existing information to establish context and thus enable the autistic individual to effectively ‘file’ and cross reference the new information. If this cross-matching cannot occur because it does not fit any other information, then the autistic individual will attempt to open all of their files at once, like reading all of the books in a library at the same time. Overwhelm and meltdown occurs immediately.

Autistic individuals experience information overload more frequently and more intensely because of one key factor; they have difficulty breaking information down into chunks that meet the criteria of Miller’s “Magic Number”.

The key to managing environmental overwhelm is to be aware of environmental factors and to plan accordingly to protect yourself from harsh conditions.

Some keys for minimising information overload are: • When teaching and instructing an autistic individual, it is important to address context first. Establish a point of reference that the individual can relate to and then link in the new information.

• Sensory overwhelm, where one or more senses are stimulated to such an extent that the individual will attempt to escape the overload. Most people will experience this type of overload when in environments that have excessive noise, bright lights, pungent scents, etc. People with sensory processing disorder can experience sensory overload in so-called normal environments.

• Break the information into “chunks” that comply with Miller’s “Magic Number”; • Trust the unconscious mind to ‘download’ and to ‘upload’ the information as required. The conscious mind overloads, not the unconscious mind. People can train both minds to communicate and interact more effectively.

Some keys for minimising sensory overwhelm are: Mapping the individual’s hyper-sensitivities and preparing the area to be supportive of the individual’s sensory needs;

Other forms of overwhelm include: • Emotional overwhelm, which occurs when a person is consumed by one or more emotions and finds it difficult to break out of the state. This is often referred to as hysteria for extreme negative emotions and euphoria for extreme positive emotions. • Keys to managing emotional overwhelm include learning how to manage your emotions through self-help groups, meditation, refocussing, etc.

Exposing the individual to sensory input in a controlled and safe environment to desensitise his overwhelm to that sense; Teaching the individual how to dissociate from the overpowering stimuli. Overwhelm is stressful for both the person experiencing it and for the people witnessing the overload. Furthermore when one person has a meltdown triggered by overwhelm, there is a high risk that others in the area may themselves become overwhelmed.

• Environmental overwhelm, which takes place when the physical body succumbs to extreme external influences such as heat, cold, wind, rain, fire, radiation and the like.

“it is important to address context first” 73

The intention of an overwhelm state is to protect. If the individual feels safe, then his chances of overwhelming will be significantly reduced. However, it is important for people to experience overwhelm in order for them to become more proficient and successful at living their lives. This is called ‘expanding your comfort zone’. You could become a hermit and live in a cave for the rest of your life, or you could get out and overwhelm yourself to such an extent that you no longer become overwhelmed. This is the path that I chose to travel and I have grown and succeeded so much as a result. Part three of this series next month will address the fear of getting it wrong.

Malcolm'Mayﬁeld Managing&Director Au/sm&STAR&Pty.&Ltd. www.au/sm;star.com Adelaide,&Australia

ii"

MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL Malcolm Mayfield is co-author of MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL of MAL Getting MAL MAL MAL MAL MAL MAL MAL MAL“The MAL Hidden MAL MALCurriculum MAL MAL MAL MAL and Keeping a Job: Navigating the MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL Landscape Employment.” MAL MAL MAL MAL MAL MAL MAL MALSocial MAL MAL MAL MAL of MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL Click on book picture to order

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Black and White Thinking Style Nelle Frances Special Needs Educator with over 16 years experience working with children on the Autistic Spectrum, Nelle Frances shares the latest thinking, best practice, tips and suggestions for those difficult transition years into adulthood. The diagnostic criteria for adults lists the following criterion: “Tendency to think of issues as being black and white, rather than considering multiple perspectives in a flexible way”. 1

Individuals on the Spectrum are known to have very “black and white” thinking. That is, they view things as good or bad, right or wrong, yes or no, on or off, love it or hate it. There are no in-betweens or shades of grey.

We see this characteristic in play through all stages of a person on the spectrum’s lifetime, from childhood to old age whether it be with the foods they eat, the clothes they wear, their special interests or the jobs they have. In relationships, those with Autism tend to be “black or white”, such that when the friend/colleague makes a transgression the relationship is abruptly ended. 2

Far from being a negative or destructive behavior, I understand that those with AS learn valuable lessons from these real-life work situations in a way they never can from Social Skills lessons or Emotional Impulsivity training. They take some time to process the events/circumstances and, over time, this helps them to be a better judge of character and identify a “wolf in sheep’s clothing”.

This impacts many aspects of life including friendships, employment, community involvement. They tend to cut people off without a backward glance. Rather than “burning bridges” (an idiom for ending something on bad terms; no going back) they simply decide that someone has let them down; betrayed them; displayed behavior they find unacceptable; shown ignorance or stupidity; lack a true understanding of the nature of Autism. For example, when our son’s GP wrote in a report that at the age of 18 he appeared to be “in remission from Autism Spectrum Condition”, our son walked out of the surgery and has never seen that GP again.

Those with AS don’t deal well with conflict and often avoid it at all costs. Referred mood (adopting and internalising the emotions experienced by the person/s in front of them) comes into play in any confrontation involving someone with Autism and often triggers a meltdown. Inexperienced individuals/professionals dealing with this trait will often view the meltdown as a “toddler tantrum”. However, those more experienced with AS know that meltdown is an involuntary fear response by the central nervous system to the stimuli entering the brain. Experts know that stress can cause AS individuals to revert to melt/shut down or become aggressive. 3

This is a coping mechanism and learning strategy for those on the Autism spectrum. Most individuals with AS have an impeccable work ethic, giving 110% of effort, dedication, loyalty and attitude to their employers. Auties rarely take sick days – they don’t like to “miss out on what’s going on”.

Even though they’re ill equipped to deal with face-toface confrontations, people with Autism are usually well able to express their thoughts/concerns via email and text messages – in fact this can become their preferred method of contact in “sticky” situations. Being able to re-read an email or text as many times as is needed to fully comprehend the information is really beneficial to those on the spectrum.

Those with Autism usually don’t realise if they’re being used and/or exploited by their co-workers/ bosses, until the co-workers/bosses gain accolades for the work the individual with Autism has done. Even then it may take repeated instances before they realise they’re being manipulated.

While we expect good counseling and/or psychotherapy to produce word and behavior scripts that help them cope with these situations, my experience has lead me to believe the best lessons individuals with Autism learn are from their real life experiences.

Once they comprehend the situation they usually resign or seek alternate employment immediately. This is also true if their work ethic is questioned in any way.

Nelle Frances - author of the Ben and His Helmet books, - co-author Sustainable Social Skills Program - Sensory Detective ™ Training Workshops - Sensory Detective program (5-12's) - Facilitator of AS Adult Social Group (18-35's) www.aspergerchild.com 77

CARING FOR THE CARERS

pain into purpose As# parents# of# ASD# kids,# our# stresses# and# concerns# are# undoubtedly# as# different# and# unique# as# the# many,# many# degrees# of#the#spectrum.#But# I# imagine# one# thing# we# all# share# is# that# we# worry# about# our# children’s#futures.

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.

The#future#is#a#place#many#of#us#can’t#let#ourselves#go# to# until#we’ve#found#some#steady#ground#in#the#newD now,#post#diagnosis#indeed,#some#of#us#still#don’t#like# to#go#there#directly,#often#or#even#at#all.#! But#it#is#always#there. Some#years#ago,#when#I#worked#in#a#government#role# meeting#with#newly#diagnosed#families#(I#must#have# seen#hundreds#of#parents)#I#was#struck#by#how#many# asked#me#what#they#could#expect#in#the#future.#I#told# them#that#I#wished#I#had#that#crystal#ball. It’s#never#a#good#idea#to#dwell#on#our#fears#about#the# future,#however#there#are#some#ways#that#we#can# tackle#this#difIicult#aspect#of#our#parenting#in#a#way# that#may#empower#rather#than#worry#us.#From#the# time#we’re#given#a#diagnosis#(and#often#long#before)# there#is#so#much#about#parenting#a#child#with#autism# that#is#disempowering.#I#always#encourage#clients#to# Iind#ways#to#reinstate!that!power.#Our#kids#need#us# to#do#that.#The#most#obvious#and#immediate#way#we# do#that#is#by#putting#therapies#in#place.#There’s# something#we#can#do#about#the#ambiguity,#and#fear# for#the#future.#We#can#turn#our#pain!into!purpose.# Try#to#Iind#a#way#to#beneIit#your#child. Pay!attention!to!what!the!politicians/ government!are!doing!for!disabilities#(i.e.#the# NDIS#–#National#Disability#Insurance#Scheme)#and# make#sure#yours#is#a#very#careful#and#informed# choice.#I#personally#feel#ashamed#of#how#this#country# treats#its#most#vulnerable.#Remember#this#… “Never&doubt&that&a&small&group&of&thoughtful,& committed,&citizens&can&change&the&world.&Indeed,&it&is& the&only&thing&that&ever&has.”& ―&Margaret&Mead Support!those!causes!and!petitions!with!which! you!feel!aligned#or#start#one#yourself#about# something#you#feel#strongly#and#passionately#about# on#change.org.#

safe, happy and loved 78

CARING FOR THE CARERS

Have!expectations,#even#if#they#are#a#little#farther# along#than#what#the#outcome#will#be.#There#is#nothing# sadder#than#seeing#parents/#professionals#who# seemingly#have#no#expectations#at#all.#I#don’t#know# how#often#I’ve#heard#“we&can’t&be&seen&to&be&giving& false&hope.”#Sure,#of#course#not.#But#worse#than#that#is# giving#no&hope&at&all.#

Donald#is#described#as#having#had#a#long#and#happy# life#in#a#small#town#in#Mississippi#where#he’s# something#of#a#local#legend#and#known#for#his# extraordinary#mathematical#skills.#I#love#that#he# assigns#everyone#he#meets#with#a#number#and#never# forgets#it. It’s#the#‘long#and#happy#life’#part#of#this#story#that#got# my#attention#of#course#(and#naturally#an#afIluent# background#helps)#but#at#the#end#of#the#day,#what#is#it# we#all#want#for#our#kids?#We#want#them#to#be#safe,# happy#and#loved#and#for#that#reason#the#future#is#a# place#worth#going#to#D#to#think#about#any#ways#in# which#we#can#help#to#build#a#world#where#our#kids# will#be#safe.

Try!to!put!a!plan!in!place!for!your!child’s!care,!in! case!something!should!something!happen!to!you.# It’s#an#awful#thing#to#have#to#consider,#and#often# involves#a#difIicult#conversation#but#it#is#important,# and#should#offer#you#some#peace#of#mind. One#family#I#was#seeing#actually#relocated#to#the# country#in#order#to#better#manage#their#new#reality,# and#last#I#heard#everything#was#working#out#very# well.#A#smaller,#closeDknit#community#and#a#slower# pace#all#around#has#been#great#for#their#eight#year#old# boy#with#Aspergers.#Luckily#his#IiveDyearDold#sister# was#also#happy#to#relocate.#I#realise#this#is#not# possible#for#everyone.

Importantly!look!after!yourself,!now!and!every! day#so#that#you#can#be#as#big#a#part#of#your#child’s# future#as#possible.# You#can#have#far#greater#impact#on#your#child’s#life#if# you’re#here,#and#Iit#and#well.#Take#breaks,#take#time# out,#and#take#care;#as#often#and#as#much#as#you#can.# Looking#after#yourself#is#one#of#the#best#things#you# can#do#for#your#child#right)now.

My#husband#and#I#have#often#fantasised#about# moving#somewhere#quieter#D#a#simpler#and#healthier# life#for#our#boy.#Somehow#the#thought#of#a#small#and# friendly#community,#where#our#child#is#known#by#the# locals,#seems#like#a#safer#option#than#the#big#brash# city.#I’m#not#sure#why#this#is,#as#small#towns#also#have# psychopaths#and#bullies,#but#it’s#food#for#thought# from#time#to#time.#This#fantasy#has#been#in#part# inspired#by#the#article#Autism’s)First)Child#by#John# Donvan#and#Caren#Zucker.#It#tells#the#story#of#Donald# Trippett,#now#pushing#80,#who#was#the#Iirst#person# ever#diagnosed#with#autism.#

#I#know,#I#know… I’m#nagging,#but#that’s#my#job ! Love# Lily

Lily Holland Counsellor/ Psychotherapist. Lily brings her complete experience to her private practices in Randwick, Baulkham Hills, or via Skype. Contact lily@lilyholland.com OR 0402 888 097 79

That Journey....!! By#Monica#Holloway author#of#bestselling#autism# memoir#Cowboy&&&Wills You know what it’s like... that special long journey that you just have to take. For many families with loved ones on the autism spectrum, the idea of a long journey can be tricky. For some, “autism” and “vacation” might feel like they just don’t mix. The thought of taking a child with autism out of their regular routine, disrupting their schedule and embarking on a journey far from home can be daunting. However, I’ve found with careful planning, preparation and organization a family journey, big or small, can be possible, as well as fun and memorable for the entire family. I’ve compiled, with the help of some of the great resources I’ve found at Autism Risk and Safety Management, some suggestions to make your preparations and journey as streamlined as possible:

Prepare your child with a rehearsal. If you are flying, contact the airport and inquire about visiting in advance of your trip. Let your child experience the hectic, unknown atmosphere of the airport and even enjoy watching the planes take off and land. At home you can role-play too, by waiting in lines, removing shoes for security, and sitting where instructed. Pick out a special “Travel Toy.” Sometimes it’s helpful to allow the child to pick out a specific toy to carry on their trip. If they do this ahead of time, they can carry it at (and near) home in preparation for the journey. It can sometimes help to feel that they are taking “a piece of home” with them Write a social story. Providing visuals can help your child prepare and understand the details and routine of the trip. Be sure to include drawings of some of the things you saw at the airport or look up items online. You can print these out and paste them into your story so that there will be plenty of visuals. The child can look at this Travel Journal many times before the trip.

Make a special needs checklist. To make the trip easier, pack allergy-friendly, favorite snacks, any medication that might be needed in case of a delay, headphones to block any unwanted noise, and any other favorite items that can help keep your child happy and engaged, such as books, a portable DVD player, or handheld game systems Don’t forget about the destination! Prepare your child not just for the trip, but also for the destination. Show him or her photos or read stories about the location. Explain that you will be sleeping in a new place and that some routines will change temporarily. Display the diagnosis. Have your child wear a bracelet, sticker, washable tattoo or other form of ID at all times that includes the child’s name, diagnosis, your name and number. Airports can be very busy and this will serve as an important tool if your child wanders.

If#you#and#your#family#embark#on#a#long# journey,#I#wish#you#all#the#best#for#a# safe,#joyful#and#memorable#experience.# Love#Monica#xx Author of autism memoir Cowboy & Wills www.monicaholloway.com 80

COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS

JOCELYN DAVIS

GENERATION NEXT Jocelyn Davis is the author of the children's book â&#x20AC;&#x2DC;There Will Always Be Loveâ&#x20AC;&#x2122;, written by Jocelyn and illustrated by her twin Jess, who is on the spectrum. They travel around the United States with Jess talking about Autism and our experiences. They also host an online show on Sunday nights, discussing disability topics of the day.

When my older sister was pregnant with my niece, she was consistently worried about making sure that the baby would be okay, as most mothers do. One word, however, kept coming up over and over again.

I know that there are behaviors I have that make me wonder how far from the spectrum I really am (I stim, I have sensory issues, I had the delayed language as a child, though I will say that no one would diagnose me as such). Suffice it to say, autism, diagnosed or not, is quite alive and well in my family.

Autism. For those who do not know, my twin sister is autistic, and as we go back through our family history, we can point out those who would currently identify as such, or come awfully close to doing so.

It only ever crossed my mind, in an academic sense, that this would be a concern for my family. The idea that bringing a potentially autistic person into the world should be a concern was something that I had never conceived personally, and once my sister had expressed this to me, another word entered my mind. Fear.

We can point out an aunt here, an uncle there, a cousin, a longgone grandparent, a parent and so on, until we exhaust all family members that we can remember.

Autism and fear. They coexist. They are inextricably linked in a way that is much more fierce and powerful than the concerns for a person who is not autistic. It is a dangerous concept that no one likes to talk about, no one likes to address. The fear of autism alone inspires terror in those who live the life of an autistic person. This fear is a threat to their personhood. This same fear has drawn an all or nothing line.

“If you fear having a child who is autistic, you support a world without it.” If you do not want an autistic child, you do not want them. The feelings inspired from this fear are not without context or evidence either. Here in the United States, I hear stories of families who are unceremoniously cut-off because they do not want to deal with the autistic person. We have politicians who want to eliminate laws that protect our autistic or otherwise disabled individuals.

things, such as sticking them in cages and feeding them like dogs. We still have schools and treatments for autism here that are nothing less than barbaric. One teacher, for example, believed it might be a good idea to put an autistic child in a box, in the classroom, as punishment. I can’t even get into the bullying these children experience at the hands of other children; studies put this number well over half of autistic children being victims. The problem with talking about fear of autism is that we do not have the discussion about why we are afraid. I tend to believe that people are afraid of their own lives when it comes to autism.

We have parents who kill their children, and are either excused from justice, or are defended by those who believe it is okay for the autistic person to die. If the parents don’t kill their children, they do other

Jocelyn and Jess in 1990 82

They are afraid of not being able to handle an autistic child. They are afraid of not having the child that they want. I may be wrong, and I have been known to be wrong about guessing the motives of others, but for those who do not have autistic children, who are afraid of having one,

I am afraid of a world where children are put in boxes, where they are killed by their own parents, where they are constantly told that they are not good enough. I am afraid of a world where non-verbal children are treated like dirt and not like the precious human beings they are.

I think this is where the majority lies. So after having been presented with this question about my niece four years ago, I assure you that I am not afraid of having an autistic child. But I am afraid.

I am afraid of a world where no one takes the time to know my child, and preys on the weaknesses he may have. I am afraid of a world where it is so easy to deem my child not good enough to not have a good education, or accommodations for that education, where learning and life is a constant fight, because too few care.

I am very afraid. I am afraid of a world that deems it okay to do all of these horrible things to our autistic brethren with little to no action against it.

I am not afraid of my future child. I am afraid of everyone else.

I am afraid of a world that has no recourse for our children after we are gone, and isnâ&#x20AC;&#x2122;t really doing much to change the course of this.

Love Jocelyn xx

OPINIONS You have them, we like to share and discuss them, here at AWM. Email: story@magswest.com Facebook: www.facebook.com/autismworldmagazine Website: www.autismworldmagazine.com

My Inspiration BY SILVANA GAGLIA As I sit here putting pen to paper, reflecting on the past 16 years, I am filled with many emotions happiness, sorrow, joy and loneliness all at the same time.

I spent many long hours on the internet and visiting the library in search of answers. I wanted to know all there was to know about treatments, prognosis, who could help, what services were available, the list goes on. I made numerous phone calls - one leading to another and to another.

As a parent of a teenager on the spectrum, I know firsthand the daily challenges and emotional impact this disorder has on families. I live the daily pressures, ups and downs and continual worry about the unknown for the future.

I was fortunate enough to have been connected with a wonderful lady, Kate Hawes also a parent of a boy diagnosed with Autism. Kate was instrumental in setting up a parent support group called ABACUS at the time. I called her and she was so friendly and helpful, sharing her knowledge and experiences. It was after that conversation that I was able to get some clarity on what I needed to do next. Of all the searching and reading I found this one conversation a turning point. Finally, I was talking to someone who truly understands, lives it breathes it,

Here is a snapshot of our journey living with ASD. Julian was born in 1997. After the initial shock of receiving Julian's diagnosis I felt the need to know all there is to know about Autism. 84

For me, the critical link was this connection of a parent that truly appreciated and understand the emotions and pressures I was feeling.

life being dragged from appointment to appointment and therapy session after therapy session. We spent a lot of time in the car, I was lucky she was a placid and very happy baby and didn’t mind the car rides.

I called DSC and got the meeting with the family coordinator pushed forward. I was determined to get started to cure Julian as soon as possible. I wanted the ‘Prescription’ ( the step by step plan, I would do anything !! ) to fix this so everything would be okay ……The hard reality is that there was and still is ‘no prescription’……

I was focused on getting Julian the best chance; no opportunity was lost for teaching. Even every day routines were seen as an incidental teaching opportunity. I recall the countless hours spent preparing resources and materials for the next day's lesson plans, finding pictures, laminating, hunting for toys/gadgets that would keep Julian on task and motivated to learn.

I have had the privilege of meeting many people with an ASD through my involvement with Autism West, No one person is the same….they are all individuals with their own special personality, skills, abilities and quirkiness. There is no one size fits all. I searched for best practice; evidence based therapies as well as looked at alternative approaches. I was willing to give everything a try, leave no stone unturned. I made choices to suit Julian and our family’s needs.

Julian had limited language which meant we had to interpret his needs and wants. This proved to be very frustrating and was the cause for his many meltdowns and tantrums. I was his mother and I often felt helpless in understanding his basic needs. Nothing came easy; Julian’s sleep was an issue. He didn’t sleep for more than three to four hours, then woke up every hour.

After much consultation and research we chose to do Early Intervention with Mildred creek, the therapy consisted of ABA and discrete trail training. I was keen to play a significant role in Julian’s therapy, Learning as much as I could. Mildred Creek offered an 8 week intense parent training Program. Mildred Creek Early Intervention Program required parents to commit to playing a part in the therapy, by attending all therapy sessions. This allowed me to truly understand and learn how to implement the activities at home to ensure we gave Julian the 20-30 hours of therapy that research advocated was essential in order to give children on the spectrum the chance to reach their full potential. The training gave me the confidence to embark on recruiting and training psychology and speech pathology university students to work at home with Julian.

Toileting: That’s a whole other story. We finally got the days sorted by the age of five. Mastering staying dry overnight took many more years. Eating: Julian had a very limited range of foods that he would eat. He lived on Weetbix, bread and butter, pasta, chips and crunchy crackers, with the odd apple here and there. We tried the gluten-free, casein-free diet, we tried supplements to no avail. Julian is now a fantastic eater. He will eat anything as long as it is not too spicy. Julian was, and still is, very sensitive to loud noises, lights, smells and textures; any of these things could set off a meltdown with no warning. We are constantly on high alert.

I worked very hard and coordinated a home program that was consistent with his early intervention. I also looked at incorporating other therapies to complement. The emotional and financial burden was a strain. My husband worked longer hours to cover the extra costs of therapy. Bianca was born in August 1999; it was a very busy and difficult time. I had a new born and a toddler, and just moved into our new house. The next few years were really tough, physically and emotionally, sleep deprived and operating on one income. Fortunately, I had 12 months maternity leave and then took a further two years of leave without pay from work, devoting my every waking hour to Julian’s therapy and my family’s needs. Unfortunately, Bianca spent a lot of her first years of

All our hard work seemed to be paying off until 2005. We seemed to have taken 10 steps backwards. Julian was defiant, always on edge having unexpected meltdowns/tantrums, was displaying self harm and showing signs of aggression to others. Motherâ&#x20AC;&#x2122;s instinct was telling me something was wrong.

There were no obvious medical explanations and I felt that I was viewed as a neurotic mother. I insisted that this was not my son and that there had to be an explanation for the changes in behaviour. Finally after six hours of continual tests, a neurologist was called. I was asked lots of questions and he did some further prodding and poking, after which he suggested we do a MRI scan under general anaesthetic. We were booked in to come back the next day

This was not my Julian. I needed to get to the bottom of it. It was the October school holidays and things progressively were getting worse. Julian was displaying more and more outbursts of aggression and was very unhappy. Again, I decided to go with my gut. After numerous visits to the doctor and dentist to check for possible teeth problems, I decided to just go to emergency at Princess Margaret Hospital; I had no where else to turn. I felt lost and alone. I had hit an emotional and physical brick wall. I was losing control.

This was a emotional experience to say the least. After 30 minutes in the MRI, the Neurologist approached us. I didnâ&#x20AC;&#x2122;t have a good feeling. He advised us Julian had a brain tumour on the cerebellum and a cyst, size of a 20 cent piece. He needed surgery NOW. I remember the tears pouring down my face. The tumour was removed and was, thankfully, benign. The initial surgery went well, however, this was not going to be the end. Further complications arose due to the damage the tumour had done. Further surgery was required.

The staff at PMH were very understanding and settled us into a room without hesitation. Julian endured countless checks from numerous doctors; throat, ears, stomach, blood tests, urine tests. 86

”The toughest part of it all was seeing Julian go through that horrific ordeal.“ Between 2005 and 2009 Julian underwent a further eight surgeries due to infections and complications. We spent months in hospitals and many months at home recuperating.

I am passionate about ensuring all people with ASD live fulfilling lives. I am a strong advocate and work tirelessly with the Autism West Board of Management to develop services that will fill the gaps in services and offer the services that are necessary to ensure people with ASD have the support they require throughout their life.

As I think back to those very stressful and frightening times I cannot believe we got through it. The toughest part of it all was seeing Julian go through that horrific ordeal with a very limited understanding of what was going on. I could see he was depressed, he withdrew from everything and didn’t trust me anymore. Slowly, over time, I was able to regain his trust.

Julian has taught me so much. He has taught me to truly appreciate what we are blessed with and not to take anything for granted. He has taught me patience and respect and he has ignited a passion in me to help others and to see the potential in all abilities.

Julian has been left suffering with debilitating migraines which we manage as best we can with medication. I worry each day. We just take one day at a time and make the most of every opportunity and everyday.

Life as we know it is tough, but I choose to see the positive in every situation. I always look for the light at the end of every tunnel. The life we dreamed we would live is still there, it just took a different direction.

I am blessed to have a wonderful family, who are very supportive and are there if ever I need. I live with hope and draw on my faith to keep me strong. Julian has developed into beautiful young man who is a real trooper. He loves life. Julian enjoys school, walking on the treadmill, going to the movies, Thomas, the Wiggles and calendars and dates. Julian also loves going places – shops, the beach, park, anywhere really.

Julian is a fighter. He is my inspiration. He has no malice or judgment. I share my story and I encourage you to share your story as an inspiration to others and to raise community awareness and understanding so that together we can make a difference to the lives of people affected by an ASD.

We accept Julian for who he is, we respect his wishes and we are working hard at building his independence for his future. I draw on my inner strength to get through each day; I celebrate all achievements big and small.

Silvana Gaglia President Autism West Support Inc

AUTISM WORLD NEEDS

YOU Share your story to help the next generation of autism families. You can contact Autism World Magazine via: Email: story@magswest.com Facebook: www.facebook.com/autismworldmagazine Website: www.autismworldmagazine.com

HOW TO GET THE BEST FROM

YOUR iPAD

with Dr. Andy Brovey

Video Lesson Ten: Keyboard Shortcuts ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven ipad academy video seven

CLICK ON PICTURE WHEN ONLINE TO VIEW VIDEO Dr. Andy Brovey has helped educators and others to make sense and make use of technology for over 25 years. In 2007 Andy was honoured to be named an Apple Distinguished Educator, part of a global community of education leaders recognised by Apple for doing amazing things with their technology in and out of the classroom. The video above is a special clip Andy made for Autism World Magazine readers and is from a longer lesson in Andy's iPad Academy Master Class series. Find out more at: ipadacademy.com

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