Issue 14 / March 2014
essential reading for those who care
Autism W rld
Magazine
On Androids, iPhone, iPad & beyond A mother who cries quietly What’s in a face?
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Autism W rld Welcome to the PDF version of Autism World Magazine If you are opening this on an iPhone or iPod use the “Open in iBooks” option. For all other PDF Reader, please refer to your specific instruction manual. Pictures labelled “Click on picture to play video” will take you to the video or download the file for playing.
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Editor’s Note
Welcome to Autism World Magazine. I am so excited to announce that we have developed this magazine for Android Devices as well as iPhones and iPads. If you are reading this on any Android device click HERE to check out our Free App. You can then subscribe to Autism World Magazine from within the App. In this issue we focus on looking closely at ourselves and others. Who do you see when you look in the mirror? Do you recognise the person staring back. Stella Waterhouse explains ‘face-blindness’ also known as prosopagnosia which affects two percent of the population and many on the spectrum. In A Mother Who Cries Quietly, photographer Tanya Giles-Hilder gives a very personal response to criticism of her work for Australian Women’s Weekly. We celebrate our first Unsung Hero, Ann Millan What’s in your food? Did you know that children could be affected by both the artificial chemicals added to their food and by chemicals naturally present in their food? Our resident nutritionist Paula Tazzyman guides the way. And there so much more. No matter on which device you read Autism World Magazine - Enjoy Best wishes to you and your family,
iain iain croft editor and publisher iain@magswest.com www.facebook.com/worldautism
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CONTENTS
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ISSUE 14 / MARCH 2014
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A$MOTHER$WHO$CRIES$ QUIETLY Tanya%Giles+Hilder%responds% to%criticism%of%her%work%in% Australian%Women’s%Weekly.
08
FACE6BLINDNESS Stella$Waterhouse% Do%you%recognise%that%face%in% the%mirror?%It’s%you.
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Publisher:
© Copyright 2014
08
MagsWest PO Box 99 Mosman Park WA 6912
info@magswest.com
Autism World Magazine is available digitally for iPad, iPhone, Androids, PC or portable device. Subscribe via the Apple Newsstand or Google Play Or via autismOz.com
06 HOW$ABOUT$THEM$APPLES Heidi%Heeman
62 YOUR$ALLY$IN$THE$LIBRARY Barbara%Klipper
20 TRIED$AND$TESTED Monique%Simpson
66 THE$IMPORTANCE$OF$MUSIC Jeremy%SicileFKira
Website:
24 TURNING$OBSESSION$TO$PASSION Maisie%Soetantyo
72 EMPLOYMENT$TRAINING Malcolm%MayGield
Facebook:
32 UNSUNG$HERO Kathleen%B%Tehrani%on%Ann%Millan%
76 ANYWAY$I$CAN
Front Cover: Tanya Giles-Hilder Beyond The Spectrum
35 FOOD$INTOLERANCE$EXPLAINED Paula%Tazzyman
79 A$FAIR$WAGE Jocelyn%Davis
46 TRAVELING$ON$THE$GAPS$DIET Jacinta%O’Connor
84 MY$14$YEARS$SO$FAR
56 USING$VISUALS$/$SIGN$LANGUAGE Catherine%Crestani%and%Diana%Wolf
86 THE$AUTISM$MODE
59 GET$OUR$FREE$VISUALS$BOOKLET Heidi%Heeman%&%Jacqui%Little
88 LOOK$MUM
Bill%Boutin
Joseph
Dr%Dan%L%Edmunds
Editor: Iain Croft
autismworld magazine.com
facebook.com/ worldautism
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.
Heidi%Heeman
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HOW
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ABOUT THEM APPLES with Heidi Heeman
Some good news Sam came home from school yesterday, sat on the couch and for the first time ever said to me "I'm hungry mum" Weird fact: Sam has never once opened the pantry or fridge EVER looking for food or a drink, yet it took him 8 yrs to say this.
Priceless Autism World Magazine - 6
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WHO'S THAT?
FACE-BLINDNESS UNWRAPPED by Stella Waterhouse with illustrations by Kate Vargues
Have you ever met someone and found it hard to recognise them because they were 'out of context'? Embarrassing isn't it? And yet for some people such things are a daily occurrence, because they have 'face-blindness': a problem which makes everyone looks alike to them and may make other people think them rude or standoffish. Stella Waterhouse is a writer and therapist who has worked children and adults with autism and other learning differences since the late 1960s puts face-blindness into context for Autism World Magazine readers.
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Face-blindness. Face-,blindness (FB) is technically termed prosopagnosia. It got its name after World War II when a soldier with a head injury returned home unable to recognise his wife. It was initially thought to be a rare condition today it is known that FB actually affects about two percent of the population to varying degrees and that it has a hereditary element: running in families where it is thought to be present from birth - and lifelong. Initially thought to be the result of linked to some abnormality, damage, or impairment in the part of the brain that controlled facial perception and memory, current research indicates that such people see perfectly well, but cannot process what they see i.e. they cannot understand that a collection of features represents an individual’s face. Some people also have phonagnosia so that they are unable to distinguish between familiar and unfamiliar voices. FB also affects many people on the Autistic Spectrum - although whether it stems from the same causes is a moot point.
While the effects vary, face-blindness can even stop some people from recognising themselves in photos or in a mirror.
How hard must that be?
Just as distressing is that, even though they may be able to identify their parents, siblings or children relatively easily in the home, it is very different in other situations and can give rise to many extremely anxiety provoking situations. Thus the child who has face-blindness waiting for his mum to collect him from school, will be unable to pick her out in the crowd of waiting parents.
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Such problems are equally as bad for adults too. Just imagine going to pick your child up from school and not knowing which one is yours. Worse still, especially nowadays, imagine approaching the wrong child simply because, like your little darling, they have curly hair or a blue coat. Or passing your spouse or child in the street without recognising him or her?
Similarly even people you see on a regular basis seem like strangers. Like the classmate who sits next to you. You may 'know' him in class but can't recognize him in the playground. The neighbor you 'know' when he's in his garden but pass and ignore in the street. The stranger in the lift who turns out to be your boss. Just as bad is the alternative: when you greet someone warmly before realising they are a complete stranger.
Imagine the difficulties such situations create.
While people with face-blindness have to deal with such situations each and every day, it makes the relatively little things hard too. Just try making sense of a film or TV program when you can't differentiate between the characters, however well known and recognisable they are. Most hazardous of all is that you can't easily tell friend from foe. This is particularly difficult in relation to bullying and exploitation for, even if you tell someone about the problems, you may not easily be able to identify the perpetrator.
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A mum's tale. After putting her three year old and his brothers to bed she changed into old clothes, washed her hair and threw a towel round it. Meanwhile the boys had become increasingly noisy - so she stormed into their room, told them all off and put them back to bed. As she left the room, she heard the youngest say in a trembling voice, ‘Who was that?’
Quite naturally such problems can make people justifiably wary of telling others that about their face-blindness but, happily, most people do develop ways of coping. Thus in social situations some people use a 'buddy' to help them identify people, or keep names and details of connections in a notebook. Meanwhile they may also use common cues like outstanding features; a beard, tattoo, jewelry or a mole, or the way the other person moves, speaks, or even smells.
Famous face-blind people. Dr. Oliver Sacks, the renowned author and neurologist. Chuck Close - portrait artist. Brad Pitt - actor. Are you face-blind too? Test your skill at face recognition at www.faceblind.org/facetests/ff/ff_intro.php
On a positive note an increasing awareness of face-blindness is leading to some promising new technological developments that may soon enable such people to identify others more easily. More information on face-blindness and ASD can be found at www.sensorydifferences.com www.stellawaterhouse.com Autism World Magazine - 11
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Tanya Giles-Hilder A mother who cries quietly
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It started as a post on the Australian Women’s Weekly Facebook Page. Photographer Tanya Giles-Hilder was said to have captured the heartache of having a child with autism in a series of provocative images Entitled 'Women who cry quietly: A mother's turmoil', Tanya teamed up with two friends to shoot pictures showing themselves struggling with their own personal crises, to help others understand that it is okay to cry. You can see a selection of images reprinted here on page 14 of AWM. "How often, as women, do we open our hearts to each other without judgement?" Tanya says. "There are many women who cry quietly, who are too ashamed or embarrassed to share their feelings, or fear they will be judged, so suffer in silence. "Life with a child with special needs is filled with light and love, but also with dark thoughts and much turmoil. I know from experience that you need help to move through those dark places and that is what this collection is about: sharing the darkness of our thoughts so we can all say, together, that everything is okay." The reaction across Facebook was immediate and brutal: It takes a very special article to be even more offensive than Autism Speaks. Well-done Australian Women’s Weekly! These photographs capture nothing...the heartache of raising these children could never be portrayed. WE are not the cause of heartache. the cause of heartache is the world in which we are Born in. I don't get it?! I'm sick of the autism as tragedy way of thinking. It doesn't do our children or ourselves any good. These images appear to merely be showing one side of the story, the hard side. This is craziness!! I have no heartache at all because I have two on the spectrum! They give me strength and courage! I'm looking forward to the photographer doing a follow up. Which is exactly why Autism World Magazine asked photographer Tanya GilesHilder to explain further.
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A mother who cries quietly by Tanya Giles-Hilder
I’ve had a career change. I was a social worker, then part-time tutor/lecturer in social work, however, life has changed for us; for the better and for the worse. It was difficult for me to make a change. It wasn’t really my choice, but we were floundering as a family. I had no idea what to do because social work is in my blood. Then our little boy was diagnosed. We were shell-shocked in our motel room. My husband ran a bath for me and we put the kids to bed. I sat in the bath with a glass of wine and cried. He sat on the floor beside me and tried his best to deal with his emotions and mine. We thought that all our dreams had come crushing down around us. The fear of the unknown was paralysing us.
Our Australian Woman’s Weekly project was born out of three woman wanting to share their reality at different times.
We are nearly two years into our diagnosis, we have a very routined home, we have visuals everywhere, we have trampolines, hammocks, you name it. I take anti-depressants for now. We unofficially believe that my husband is on the spectrum too. Are we happy? Yes. Would we change our son? No. Is life hard? Beyond belief. To cope with our little fella’s behaviours, one of which was lining everything up, I started to photograph them. Beyond the Spectrum Photography was born. Tanya’s boy
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Tanya felt so very low that I have cried quietly; I have not shared my journey in fear of judgement. I have not wanted to look less than I am. Our project wants to raise awareness of autism, of women, and of mental health issues. Each of the images show an emotion experienced by at least one of our trio. Only two of us have children with autism. We wanted this project to be organic, as life is moving constantly. As we started we could see that many of these experiences were felt by many women for many various reasons: domestic violence, sexual abuse, divorce, eating disorders, bankruptcy, death. I could go on and on and on.
The aim of the project was to say, “we hear you”. We, too, at some time have felt like this. It is okay to feel this low, it is okay to reach out for help and it is okay to heal and move on. All artists are aware that once you release a piece of your craft you can no longer control it. It will be understood in the context of the person who views it. However, an artist loves what they do, so a piece of their soul goes into every work they do. What do I think of the reaction to Women who cry quietly; a mother’s turmoil…..?
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I feel disappointed that it’s so typical. That the very essence of what we are wanting to share around judgement, empathy and relationship building is exactly what hasn’t happened. The point of the project has been missed completely. However, I also think that conversation in a healthy manner is important, even when there is disagreement. I think conversation brings awareness, for all the people that are commenting there are equally if not more who are sitting back watching, observing and thinking. Perhaps reading a comment or viewing one of the images and realising something for themselves for the first time. Perhaps someone will open up about their own experience, or perhaps someone will ask someone if they are okay. No matter what we do, whether we have children on the spectrum or not, everything we do leaves an imprint. Our aim for the project was to leave a positive imprint on other women by saying “this is how we felt once, it’s as awful as it can be, but look where I am now”. The sad reality is that some women struggle; not all but some.
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Some women self harm, some women have eating disorders, some women sit on the bottom of the shower and cry. Some of these women have children with autism and find life exceedingly difficult at times. Some are working through many other life challenges. Does this mean that there is no happiness or light to look to? Of course not. It just means that we three women wanted to highlight these taboo topics so that perhaps next time there is a conversation, other women may show empathy for them instead of judgement. Here’s to the next conversation, and the many conversations that we will have with our little fella. Will I tell him that I lay on the bottom of the shower and cried when he was diagnosed? Of course I will.
Will I tell him that all my dreams were shattered for what I wanted for him? Yes of course when the time is right. Will he be damaged by that? Of course not, because I will tell him that with the end of those dreams came new ones. With the new knowledge we learned constantly, we saw the world from a different view. That is the gift he has given our family. I will share with him that life is a journey, it is difficult at times no matter whether you have autism or not. With the love and support he has from many family and friends he will continue to lead a very fulfilling life, and that he has been blessed to have been born into this family, as we have been blessed to have been given him. Tanya
"living life in colour beyond the spectrum"
facebook.com/pages/Beyond-theSpectrum-Photography/ 456581461045084 www.beyondthespectrumphotography.co m.au/index.html
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Need$someone$to$talk$to?
24-Hour Autism Hotline
1300 222 777 (Australia*Only)
The Autism Advisory and Support Service (AASS) runs a 24-Hour Autism Hotline which is staffed by parent volunteers who have children with Autism. You can call any time of the day or night, from anywhere in Australia, to chat to someone who can offer service and guidance from a parent's perspective. Whenever you call AASS you are speaking a parent of a child with Autism so you know that you are talking to someone who understands what you are experiencing. Parents and carers waiting for a formal assessment and diagnosis, looking for the right intervention and joining the long waiting lists can be extremely overwhelmed, confused and frustrated. AASS will help with unbiased advice, encouragement, guidance and support. If you get the answer-phone please leave your number and a message. We will call you back. Autism World Magazine - 18
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TRIED AND TESTED WITH MONIQUE SIMPSON Speech Pathologist Ba.App.Sc (Sp Path)
Have you tried blowing as a calming tool?
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
Helping children with ASD be in a calm and organised state of arousal is often at the forefront of our minds when treating these children Why?…. because we know that this leads to more successful interaction and learning opportunities, not to mention finding it a more relaxing way to live! There is so much about life that does not make sense for kids on the autism spectrum and as a result anxiety can certainly be an ongoing challenge. There are loads of different strategies that we can incorporate into the child’s day to achieve greater calm. We know that providing the muscles, joints and ligaments with lots of heavy work/exercise is quite often a very regulating activity for most children. Another therapy strategy that I often get families to incorporate, where possible, is ‘blowing’. Considering that kids with ASD are often spending significant periods of their day in ‘fright, fight, flight’ mode’ it means that their breath can be really quite shallow. By targeting blowing exercises you are encouraging a deeper breath, which in turn helps calm the nervous system down. Autism World Magazine - 20
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Just think about the times that you have been operating in a fright, fight, flight manner and someone said to you “Just breathe” or “Take a few deep breaths”. Why were they encouraging this? To help you calm down!
If you’re not sure if your child can blow then in a very playful way you can encourage this by using a range of different whistles, party blowers etc.
When starting out you obviously want to model using whistles and musical instruments that are easy to blow to help the child feel successful. Be playful, do not force the child and remain encouraging. Once your child can blow your aim is to try and encourage a longer and more continuous breath because this is promoting deeper/diaphragmatic breathing. The examples below are my favourite pieces of blowing equipment:
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“achieving a greater sense of calm�
Blowing through different sized plastic plumbing tubing, from the hardware store, into bubbly water. You will find this in the hardware store rolled up like a hose and you can request the length that you want.
These kinds of blowing activities certainly do calm down the nervous system. I love participating in blowing with my clients because I know that I too will feel calmer afterwards! You can find a range of different motivating blowing equipment on various websites like www.senseabilities.com.au or www.sensorytools.net
Of course getting children moving and engaging in activities that really work their muscles (e.g. climbing, running, jumping on a trampoline, swimming etc) also encourage deeper breathing and therefore is a wonderful way of achieving a greater sense of calm.
Blowing up balloons using a one way valve so that the air is trapped after each breath. I always encourage parents to keep an extra set in the car or in their handbag for helping a child get into a more calm state of arousal before entering an environment that provokes anxiety.
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www.connecttherapy.com Autism World Magazine - 23
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Solutions for busy parents with Maisie Soetantyo
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Turning Obsession into Passion
On a beautiful summer day in Chicago last year, my family and I were enjoying the view on a water taxi. As we were reaching the Navy Pier, a man who has been sitting close to us struck up a conversation about getting on a train. It went something like this: Man: “I am going on a train to Washington D.C.” Me: “Oh that sounds exciting, are you going to visit your family?” Man: “The train is going to leave at 2.45 pm from North State St. and arrive in Washington Union Station at precisely 6.30 pm tomorrow” (then he shared a variety of Amtrak schedules leaving from Chicago). Me: “Ah so many options!” Man: “Performance metric is color-coded to each train…..” (Then he went on and on talking about train maintenance system in the U.S.) Me: (I started to understand what was going on, and I waited patiently for a pause). “So which city is your favorite to visit on a train?” Man: (No answer and he walked away).
The above conversation illustrates the type of conversations we frequently encounter with ASD individuals. It is informative to the very least, but after so many exposures to the same topics and lack of flexibility on their part to take in and integrate others’ perspectives, it can be exhausting to engage in conversations with them.
For them a high interest theme frequently turns into an obsession and isolation. Steven, a 15 year old boy with ASD has always loved drawing elephants since he was a little boy rarely drew other objects. Although he produces beautiful art work, without any flexibility to incorporate people’s feedback, it would be difficult for him to work as an artist in the future.
Studies such as Deloache, Simcock and Macari’s (2007) have reported extremely intense interests in planes, trains and automobiles in Neurotypical young children. However, individuals with ASD have the most difficulties in turning a high personal interest theme into a productive leisure activity with others.
What can we do as parents and professionals to help turn an ‘obsession’ into ‘passion’ and to turn a ‘meaningless’ interest into ‘meaningful’ engagements that can be shared with others? How can we help a talented person to take in other people’s perspectives, so that his/her unique interest and ability can be a potential future career? Autism World Magazine - 25
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Gearing Up for Quality Time To expand on very deeply-rooted solitary habits in individuals with ASD, adult guides need to consistently plan carefully, choose a good time to initiate and to slow down the activities. Breaking any bad habit needs determination and commitment, and since the child is more likely to be unmotivated to make any changes, the guides are the ones responsible for introducing novelty and to stick with it! One idea that has worked well with the families we work with is to have a ‘family’ meeting and create a family schedule for new family activities. For example, Sofia, a six- year-old girl with Asperger agreed that Thursday nights and Sunday mornings would be ‘Wacky Time’ for her and her parents. For Sofia this means that she and her parents would learn something new together. Sofia has had an extreme fixation on dolls since she was 18 months old; carrying a doll everywhere, thinking and talking about her favorite dolls most of the time, playing only with dolls, not wanting to play with other children unless they want to incorporate doll themes, and not letting anyone touch her dolls.
The family made a weekly list of things they could explore together, such as; trying new foods, learning about reptiles, incorporating stuff animals into doll play, creating collaborative art projects with doll themes, or trying a new game not related to dolls. This weekly list was revised with everyone’s input, and the list was on their fridge so Sofia could refer to it and stay with what was agreed upon or continue where they left off last time. What this ‘visual schedule’ has done for Sofia was to reduce her anxiety when experiencing novelties, and she got to see that it was not just about what she or her parents wanted, instead it was about what the two participants wanted to explore. After about two months of practicing ‘newness’ in a variety of activities, Sofia’s anxiety was significantly reduced. The family schedule gradually expanded to include possible activity selections for playdates. Sofia also gradually began to pay attention to a variety of conversation topics, and participated when others initiated conversations.
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Give and Take
Ways to practice ‘give and take’:
We can see above that Sofia’s parents incorporated the doll theme within their initial schedule, to lessen Sofia’s anxiety. However, they were very clear and specific in their expectations of ‘collaboration’ in all of the proposed activities. Sofia’s parents discussed and role-played the concept of ‘give and take’ using a variety of objects; sometimes they involved dolls, most of the times not. They clearly defined behaviors, such as dominating conversations with one singular topic, grabbing items during play, or arguing as unacceptable. Sofia eventually understood the idea of ‘me and you’ during interactions. Once Sofia was willing to participate in novel themes, she did not have to latch on to her dolls as her security blanket in uncertain situations.
Turn taking when adding new elements-Set up the expectation that each person will add something new into the activity. Another consideration is to incorporate gestures in deliberate and amplified ways instead of saying “my turn” and “your turn” verbally, which seems to increase anxiety by putting the child on the spot to shift his/her perspective on demand.
At the beginning of the process of creating new experiences, it is helpful for the child to know that his/her preoccupation with certain objects or themes is not something negative, but taking in variations from others can create mutual enjoyment.
The benefit of using multi-channel communication is to make the guide’s intention clear in a non-threatening manner, and this helps to shift the child’s perception from being instructed to being invited. Alternating interests between guide and child-It is important for individuals with ASD to understand that other people have their own preferences, thoughts and feelings. In Sofia’s case, she practiced listening to her mom’s favorite subjects and they would go back and forth sharing a variety of thoughts and ideas. Eventually they generalized this turn taking format when talking on the phone, looking at funny pictures, writing notes to each other and making story books together.
“create mutual enjoyment“ Autism World Magazine - 27
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Set Boundaries
Baby Steps
When a toy, device or theme has become an obsession, it may not matter how slow and diligent the guides are, establishing collaboration can still be extremely difficult. Screen addiction, particularly in teens, is a common obstacle to having a productive engagement. Thus many parents with ASD children must deal with this obstacle first before moving on to other objectives.
When parents are ready to tackle their child’s obsession, starting slowly with short opportunities one day a week would be wise. Gradually expand those new activities by adding new elements, making sure that decision making involves the child instead of parents making decisions for their child.
In our family, we define the term “addiction” as difficulties transitioning into other activities, overly thinking about a specific activity, talking and gravitating towards that one specific toy or activity. Our kids know that if they frequently ask to play with a screen device, then we would impose a NO SCREEN time over a certain period of time, and they have to earn back their screen time. Although the older age group might not be as easy as the younger kids to control, utilizing a family calendar, agreeing on replacement activities and simply taking an extended break from the obsession would help. What is critical is how parents fill the “noscreen” time with productive opportunities, even when they are in short increments with the child complaining all the way! Eventually these new activities will be part of the new daily routines.
Not rushing through activities is also very important, since anxiety could easily take over and resistance would build up quickly, parent and child both need longer processing time to make decisions and stay calm. Model what is expected at the beginning and during transitions of a new activity, and make sure that the child understands the role he/she is supposed to take on. Keep activities simple, if this is the first time a child participates in cleaning up his/her room, start with just one part such as, fluffing up pillows, folding a blanket, or picking up dirty clothes. Again, focus on working together instead of making demands. Lastly, keep it short and sweet, even when things are going great, an activity does not have to be completed or last for an hour. Remember in order to teach flexibility, the guide has to be flexible in making adjustments in the moment. It’s the guide’s job to make the call when to end an activity or when to take a break. Be encouraging and supportive during break downs, help the child to calm down and decide together to continue or to take a break.
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Expand and Explore New Ideas Parents frequently complain that they lack ideas for new activities to do with their child. This is actually a perfect reason for parents to sit down with their child, and explore new possibilities. Explore ideas for new projects online, look at new cook books, or go to the library together. Take a look at this inspiring video clip below of Caine, a nine-year-old boy from Los Angeles, California, whose hobby of turning boxes into a
variety of arcade games inspired other children and their parents to do similar projects. John (9-years-old) was inspired by Caine's Arcade
CLICK ON PICTURE WHEN ONLINE OT PLAY THE VIDEO caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video caires arcade video
Caine’s Arcade
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Capturing and Encoding the Right Moments For individuals with ASD, encoding meaningful moments in their lives is very challenging. They mostly remembered the static, peripheral and unimportant details, such as rules, sequences and instructions, instead of what they learn from an experience for future decision makings. This difficulty in remembering and capturing subjective experiences (Episodic Memory) is one of the main core deficits in Autism. Therefore a guide’s role in spotlighting critical moments is crucial in building competence and motivation to explore new things. To strengthen pathways to Episodic Memory, parents along with their child could experiment with creating written or audio journals, picture books, recipe box, mementos, as well as sharing reflections of their new experiences (reviews).
Reference Deloache, J. S., Simcock, G., & Macari, S. (2007). Planes, trains, automobiles-Extremely intense interests in very young children. Developmental Psychology, 43, 1579–1586.
About the Author
Maisie Soetantyo is a parent coach certified in Relationship Development Intervention (RDI) method, a parentbased intervention designed to remediate the core deficits of Autism (RDIconnect.com). She is passionate about empowering parents with special needs children to make a difference at home.
To conclude this article, providing new opportunities for individuals with ASD would eventually lead to a greater sense of competence in future self-explorations. A study on adaptability in 29 children and teens with Autism through a period of nine day-exposures to new opportunities that I conducted as part of my Master’s degree completion indicated notable improvements in all children. So parents, gear up and the changes would be well worth it!
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Unsung Hero - Ann Millan by Kathleen B Tehrani WHY am I about to rave about the work of Ann Millan? (pictured right) Because she has been successful beyond measure... yes... but mainly because I know that Ann is far too 'Sincerely Humble' to do it for herself.
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Ann Millan is a 40+ year autism advocate who raised a very successful and happy daughter (Robin) with CLASSIC autism. Not high functioning, not asperger's syndrome, but CLASSIC autism. Robin works two jobs, drives her own car and owns her own condo. Her mother, Ann Millan, refused to accept that her daughter would be doomed to a life of dependency. To share her information with others, Ann wrote: AUTISM: Believe in the Future. To share all of her information with others. Self published. I know she has never recouped what it cost her to self publish....but Ann is an advocate for her daughters and an advocate for other 24/7.
Ann has made numerous presentations for many autism organizations. All have been for no pay. Please take a look at Ann's website:Â www.autism-believefuture.com. Rarely has someone given so much....and requested so little in return. ZERO actually. Â Kudos to the most supportive and EFFECTUAL advocate (both for her own child and for countless others)...that I have the privilege to know. Tremendous respect for Ann Millan. I know MANY in the autism community....but Ann Millan is the real deal. She is a selfless hero.
To Nominate your Unsung Hero
CLICK HERE
Robin Ann and
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eat play Learn
Essential thinking on food, education and play from the most respected minds across the Autism world.
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Food Intolerances Explained with PAULA TAZZYMAN Accredited Practicing Dietitian BSc Ma Nut & Diet (Sydney Uni)
Did you know that children could be affected by both the artificial chemicals added to their food and by chemicals naturally present in their food? This is especially true for children diagnosed with ASD who tend to struggle with the detoxification processes and have difficulties breaking down chemicals in the body. Out of the 300 or so chemicals added to our food supply only 50 are problematic. You can see full list here of additives to avoid. It is hard to understand that natural food chemicals can be as problematic as artificial additives (colours, flavours, preservatives). Foods that are very nutritious may be high in natural chemicals. Parents often grapple with the fact that highly nourishing foods may be the root cause of many symptoms and behaviours.
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There%are%three%main%groups%of%natural%food%chemicals: 16%Salicylates%in%plant%foods%like%fruit,%vegetables,%nuts,%seeds%and%spices. 26%Amines%in%protein%foods%like%chocolate,%cheese,%lessFthanFfresh%meats,% seafood%as%well%as%some%fruits%and%vegetables. 36%Natural%glutamates%in%soy%sauce%and%hydrolysed%vegetable%protein%and% tasty%foods%like%tomatoes,%grapes,%cheese,%sauces,%stock%cubes,%gravies. Effects%of%food%chemicals%can%include: •%Behaviour%issues,%aggression,%irritability,%restlessness,%difGiculty%falling% asleep,%night%terrors,%frequent%waking,%restless%legs •%Mood%swings,%anxiety,%depression •%Poor%concentration •%Tiredness •%Speech%delay,%learning%difGiculties,%stuttering%and%tics •%Eczema,%and%other%itchy%skin%rashes •%ReGlux,%colic,%tummy%pains,%bloating,%constipation%and/or%diarrhoea •%Bedwetting%and%other%bladder%issues •%Headaches%or%migraines •%Asthma •%Joint%pain,%arthritis,%heart%palpitations
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In%this%13%minute%video%below%I%will%explain%the%following: •%What%are%food%intolerances? •%What%are%the%symptoms%of%food%intolerances? •%Is%there%a%family%history%of%food%intolerances? •%ArtiGicial%chemicals%to%avoid •%What%about%natural%food%chemicalsF%salicylates,%amines%and%glutamates%? •%Is%there%a%test%that%can%be%done%to%see%what%foods%your%body%is%intolerant%to? •%What%is%an%elimination%diet%and%how%can%it%be%implemented
CLICK ON PICTURE WHEN ONLINE OT PLAY THE VIDEO Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svideo Paul’svi
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Resources www.fedup.com.au www.cs.nsw.gov.au/rpa/allergy Fed%up%(2008)%and%The%Failsafe%Cookbook%by%Sue%Dengate The%Elimination%Diet%Handbook%with%food%and%shopping%guide%and%Friendly%Foods% cookbook%by%the%Royal%Prince%Alfred%Hospital%Allergy%clinic.%These%are%great% resources%with%all%the%foods%categorised%into%low,%moderate,%high%and%very%high% content%of%natural%chemicals. http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.html% Please%discuss%any%modiEications%with%your%Doctor%and%ensure%you%seek%advice% before%embarking%on%a%low%chemical%diet.
In%Wellness, Paula%x www.paulatazzyman.com.au
Got a question for Paula?
Email: story@magswest.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com
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S T A E R T Y Z Z A T ts a e r t l mica e h c low
s recipe l a c i m e
at
low ch e r o Find m cipes e r / u a . up.com d e f / / http:
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Tazzy Treats Pear bread gluten free, dairy free and low in natural chemicals
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Pear bread Ingredients 825 g can pears in syrup 1 1/2 cups self-raising GF flour, sifted 1/3 cup brown sugar 1/2 tsp bicarbonate of soda 1/2 tsp GF baking powder 1 egg, lightly beaten ideally organic 1/2 cup oil rice bran oil 1/2 cup raw cashews crushed - optional Directions: Preheat oven to 180 째C. Grease a 15cm x 25cm loaf pan and line with non-stick baking paper. Puree half of the pears and chop remaining. Measure pear puree in a jug or measuring cup and add enough reserved syrup to make up to 1 cup. Place dry ingredients in a large bowl. Add egg, oil, pear puree mixture and chopped pears. Gently fold together until just combined. Bake for 1 hour until. Cool bread in pan. Store in an airtight container. Can be frozen
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Tazzy Treats Pear Carob Pudding low in natural chemicals, gluten & dairy free
Ingredients 1x 800 grams of tin pears in syrup 2 eggs ideally organic 125 grams of white sugar 125 grams of gluten free self-raising flour 1/2 teaspoon baking soda 1 teaspoon vanilla essence 2 tablespoon carob powder 6 tablespoon of Nuttelex 1 tablespoon Nuttelex dairyfree spread to grease
Directions Spread 1 tablespoon of Nuttelex over a flat ovenproof dish. Separate the pears from the syrup. Keep syrup for later. Arrange the pears in the center of the baking dish. Place eggs, sugar, flour, baking soda, 6 tablespoons Nuttelex, vanilla essence and carob powder in blender. 5. Blend till it becomes a soft brown batter, add 1/4 cup of the pear syrup if the mixture is too solid. 6. Pour the batter over the pears in the dish, and place in a preheated oven 180 C, for 30-40 minutes. 7. Remove when brown and golden. 1. 2. 3. 4.
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Tazzy Treats Cashew Pear “ice cream� One of my clients shared this low chemical; gluten and dairy free treat with me. Pears and cashews are low in natural chemicals. Ingredients
1 cup raw cashews 1 very ripe peeled large pear - chopped 2 tablespoons water or rice milk 1 teaspoon vanilla essence
Directions: 1. Blend cashews until they are a flour-like consistency. 2. Add the pear, vanilla and water/rice milk and blend until
creamy, adding more liquid if needed. 3. Freeze for a couple of hours before serving. 4. It sets hard so you may want to leave it out for 10 minutes or so before serving.
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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
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Become a Full or Professional Member of Autism West and, on top of our fantastic Centre, Support and Resources, get the Digital Edition of Autism World Magazine FREE each month. For iPad, iPhone, PCs, Desktop and all portable devices. You get so much more with Autism West. Autism West offers the following Membership Options:
Full$Membership $25$per/annum • • • • • • •
Access%to%Argonaut%Autism% Resource%Centre%at%Autism%West Can%request%items%for%us%to% purchase%using%our%funding%from% Argonaut%Limited Electronic/email%Autism%West% updates Family%Advocacy%support Free%family%entry%to%the%end%of%year% party 10%%discount%on%Autism%West% workshops%and%conferences 12%month%subscription%to%the%Digital% Edition%of%Autism%World%Magazine.
Professional$Membership $50$per/annum • Access%to%Argonaut%Autism%Resource% Centre%at%Autism%West • Can%request%items%for%us%to%purchase% using%our%funding%from%Argonaut% Limited • Electronic/email%Autism%West% updates • Family%Advocacy%support • Free%family%entry%to%the%end%of%year% party • 10%%discount%on%Autism%West% workshops%and%conferences • 12%month%subscription%to%the%Digital% Edition%of%Autism%World%Magazine • Invitation%to%professional%events% hosted%by%Autism%West • Hire%our%rooms%at%Autism%West%at%a% discounted%rate • Access%to%a%TOBY%Consultant • Professional%updates%about%Autism% Resources
Au#sm&West&Support&Inc&&&&&&&&|&&&&www.au#smwest.org.au 41&Broadway&Nedlands&WA&6009&&&&|&&&PO&Box&666,&Nedlands&WA&6009 Tel:&08&6389&1833&&&|&&&Fax:&08&6389&2600&&|&&&Mobile:&0414167345 Autism World Magazine - 45
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Supporting the
GAPS Diet ™
with Jacinta O’Connor Jacinta O’Connor Nutritionist Naturopath Certified GAPS Practitioner MINDD Practitioner Additive Alert Presenter Kardinya, WA, Australia
Jacinta runs GAPS workshops and support groups in Kardinya and Nedlands, Western Australia nutritionmatters@ozemail.com.au
GAPS™ is the registered trademark of Dr Natasha Campbell-McBride.
Each month in Autism World Magazine Jacinta O’Connor takes you through some of the practical steps to help GAPS work for you and your family. And if you are using GAPS send us an email and let us know how you are going. support@magswest.com
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Travelling* with*GAPS * ™
&&!Jacinta!O’Connor!
Cer#fied&GAPS&Prac##oner&&
Travelling&on&GAPS&is&easier&with&a&liRle&prepara#on&before&your&departure&date.& Airline&food&is&not&oTen&GAPS&friendly.&To&avoid&starva#on&and&tantrums,&I&have& listed&some&GAPS&friendly&snack&ideas&for&air&travel.&For&the&campers&among&us,& prepara#on&is&the&key&to&enjoying&your&holiday&and&ensuring&everyone&is&well&fed,& and&you&are&not&constantly&swea#ng&it&out&over&a&camp&stove. Wondering&how&you&are&going&to&make&stock&while&travelling?&Bouillon,&or&portable& soup,&is&the&answer!&The&instruc#ons&for&bouillon&making&are&included&along&with& some&recipes&to&make&travel&a&liRle&easier.&
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Air!Travel!with!GAPS • Stock&chips/bouillon&cubes&–&can&be&added&to&boiling&water&to&make&your&cups&of&stock. • Beef/salmon/chicken&jerky • Boiled&eggs • Cheese • Fermented&mayonnaise&(not&over&100ml) • Prawns/lobster&tails • Roasted&meats&with&a&small&freezer&pack • Avocado&H&whole • Yogurt/Fruit&leathers • GAPS&Jellies&(see&the&February&issue&for&the&recipe) • Bacon&(nitrate&free,&addiMve&free&and&cooked) • Steamed&vegetables&in&a&container • Raw&vegetables&–&cut&up • Roasted&vegetables • GAPS&Pancakes&with&buNer&(You&can&dehydrate&them&to&make&them&more&cracker&–&like) • Zucchini&chips&or&kale&chips • Meatballs • Bliss&balls • GAPS&Nut/Seed&Muffins&and&Breads • Liver&pate&with&a&small&ice&pack&(less&than&100ml&of&liquid&in&the&ice&pack) • Soup&or&smoothie&in&a&thermos&to&be&enjoyed&just&before&you&move&through&security.&The& thermos&can&be&washed&out&and&taken&in&your&hand&luggage. If&you&have&concerns&about&being&quesMoned&by&airline&authoriMes&about&the&amount&of&food& you&are&taking&onHboard,&explain&you&have&food&intolerances.&You&may&request&your&Doctor,& Naturopath,&DieMcian&or&NutriMonist&to&provide&you&with&a&leNer&staMng&you&have&food& intolerances&and&need&to&take&your&own&food&on&board&for&the&flight(s). Remember&to&pack… • Kefir&grains&in&a&liNle&milk&(packed&in&suitcase&when&flying) • Yogurt&starter
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Camping!with!GAPS • Coconut&bread/banana&bread • Bliss&balls/muffins/GAPS&pancakes/breads • Sausages/eggs/bacon/tomatoes&for&breakfast • Stock&chips/bouillon&cubes • Dehydrated&fruits&and&vegetables&such&as&zucchini&chips,&green&apple,&banana,&tomatoes&etc • Yogurt&and&fruit&leathers • Make&double&batches&of&food&the&week&prior&and&freeze&them • Coconut&milk&for&cooking&with • LeNuce&for&wraps • Minced&meat&including&liver • Homemade&tomato&sauces • Roast&a&chicken&and&freeze&it.&It&can&be&used&for&cold&meat&and&salad&or&the&chicken&can&be&
warmed&on&a&camp&stove
• Shred&cheese&beforehand • Jerky • Tinned&sardines&for&emergencies!
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Homemade'Bouillon' (Portable'Soup) Homemade bouillon or portable soup is a simple, traditional way to keep stock always on hand without having to make it fresh every time. While the bouillon can be made without purchased gelatin, gelatin ensures that the bouillon comes together easily and firms up properly for longterm storage. Do not use vegetables to flavor your stock as they may decrease the length of time you can store the bouillon and they will take much-needed space in your stock pot for gelatin-producing bones.
Makes: 16 cubes (16 servings) Cook Time: 10 hours 45 minutes Ingredients 5kg meaty bones (chicken, beef, lamb, pork, etc.) 2 tablespoons black peppercorns 2 bay leaves 2 teaspoons unrefined sea salt 2 tablespoons gelatin (optional)
Reducing the stock to make bouillon
Method Preheat the oven to 425 F/220C. Place the bones in a large baking dish, and roast them for 45 minutes. Place the roasted bones, peppercorns and bay leaves in a large heavy-bottomed stock pot. Cover with filtered water and bring to a boil over moderately high heat, reduce the heat to medium low and simmer, uncovered, for eight to ten hours. Strain the stock into a large mixing bowl through a fine-mesh sieve. Refrigerate for at least eight hours. You should have about 4L of stock. The stock should gel in the refrigerator, however it’s not necessary. The fat will rise to the top of the stock. Pick it off and reserve it for another use such as frying vegetables or cooking meat. Transfer the stock to a shallow, wide-mouthed pot, stir in salt and bring to a boil over high heat. Continue simmering until the stock is reduced to 1 cup. This should take around forty-five minutes depending on the surface area of your pot. Please note that the amount of time it takes to reduce 3 – 4L of stock to 1 cup will depend on the size of your pan. A very wide and shallow pan will allow the stock to reduce in about 45 minutes. A traditional stock pot will take several hours.
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Whisk gelatin into the hot stock and pour into a glass or ceramic dish measuring around 8 cm by 8 cm. Refrigerate for at least eight hours. Cut into 2cm x 2cm blocks. Each cube of bouillon will produce one cup of stock. Simply drop the homemade bouillon cube into one cup hot water, stir to dissolve and serve. The bouillon cubes can be stored in an airtight container at room temperature for at least six months. Stock chips- You can dehydrate the bullion cubes for a few hours to create stock chips! Spread baking paper/parchment paper on the dehydrator tray and place the cubes around 5 cm apart on the paper. Dehydrate for 2 – 3 hours depending how large your bullion cubes are and how high you have your dehydrator. Allow to cool and then break into chips. Powdered Stock – If you wish to make powered stock, once the dehydrated stock is cooled, place in a clean coffee grinder. Grind until a fine powder. Store in the fridge. Use 1 tsp of powder to make 1 cup of stock. Adapted from: Nourished Kitchen http://nourishedkitchen.com
Cutting the bouillon into cubes for storage or to dehydrate
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Yogurt and Fruit Leathers
Raspberry and Banana Fruit Leather ready for dehydrating
Recipe
• 1 cup of 24 hour fermented homemade yogurt • One banana and ½ cup of raspberries. (You can use other fruit combinations such as papaya, nectarine, blueberries, mango etc.)
• A little honey (optional) Method Place all ingredients in a blender. Blend until smooth. Pour the mixture onto dehydrator drying racks lined with parchment paper and dehydrate at a low temperature. You can leave it soft like a ‘roll up’ or dry it further for yogurt chips. Note: If you wish to make fruit leather, you can blend fruit without adding yogurt. You may need to add a little filtered water when blending the fruit.
The finished product Raspberry and Banana Fruit Leather Autism World Magazine - 52
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Homemade Beef Jerky Ingredients 1.5kg meat (a roast) 2 tablespoons honey 6 cloves garlic, crushed 1/2 teaspoon black pepper 1/4 cup apple cider vinegar 1/4 cup olive oil 1 teaspoon cayenne 1 teaspoon paprika 1/2 teaspoon ginger 2 teaspoons sea salt Method For ease of slicing, place thawed roast in freezer for 45-60 minutes. A slightly frozen roast is easier to slice. Set a timer so you don’t forget. A solidly frozen roast is not easy to slice! Use a sharp knife to slice roast into thin strips (3 -4 mm thick or less if you can) and place strips into a bowl. Cover with remaining jerky ingredients and toss to coat meat evenly. Place in the fridge for 12-24 hours (covered if using a bowl), stirring once half way through to evenly distribute marinade.
Jerky Tips Popping the meat into the freezer for about 15 minutes beforehand makes the meat much easier to slice thinly. The thinner you slice the meat, the less time it takes to dry. A ceramic knife is the best tool for getting the thinnest possible slices. Place baking paper on the base of the dehydrator or counter before placing the meat strips on the trays. It will make your clean up easier. Store your jerky in large canning jars in the pantry. You can also store it in the refrigerator if you wish.
place strips of meat on dehydrator
After marinating, place strips of meat on dehydrator tray. They can be touching but not overlapping. Dry on the highest setting your dehydrator has for 7 hours. Store in the pantry or refrigerator in glass jars.
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Bliss%Balls • Ingredients • ½ cup almonds • ½ cup raisins (sulphur free) • ½ cup almond nut butter • ¼ cup raw honey • 2 tsp cinnamon • 1 ½ tsp cardamom • 1/3 cup shredded or grated coconut • • Method • Grind the almonds fine in a food processor. • Add the raisins and grind until they are chopped up. • Add the almond butter, honey, cinnamon and cardamom, and blend until everything is well mixed. • Empty the mixture into a mixing bowl. • Place the shredded coconut into a bowl or plate. • Form 2.5cm balls from the mixture and roll them in the coconut. • Store in the refrigerator. • Makes 24
When you are supporting your child, children or perhaps your whole family on the GAPS Protocol, it is vital to make time for holidays. They are an opportunity to breathe again, reflect on your achievements to date on the GAPS Protocol and with some preparation beforehand, enjoy time away from the GAPS kitchen!
For those of you i Western Australia Jacinta’s next GAPS Support Group Meetings are on the evenings of Monday March 24th in Kardinya and Thursday March 27th at Autism West in Nedlands. Autism World Magazine - 54
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http://www.walknowforautismspeaks.org/ losangeles@autismspeaks.org
https://www.facebook.com/AutismSpeaks.LosAngeles
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Using Visuals sign language and choice boards Following!on!from!their!introduc>on!to!visuals!in!last! month’s!issue,!Catherine!Crestani!and!Diana!Wolf!discuss! and!provide!examples!of!puDng!this!into!prac>ce.!
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Sign&Language Many&therapists&and&early&childhood&se`ngs&will&use&sign&language&as&a&means&of& ‘visual’&communicaMon&to&support&children&with&language&delays.&This&helps&the&child& with&their&understanding&&and&also&provides&another&way&for&them&to&communicate,& especially&if&they&are&not&talking&at&all.& The&concern&that&many&parents&have&that&sign&language&may&inhibit&verbal& communicaMon&from&their&child,&is&not&true.&In&fact,&research&has&shown&that&using&sign& helps&promote&a&child’s&communicaMon&skills.& The&most&common&signs&used&include&toilet,&finish,&more,&eat&and&drink.&This&ocen& comes&from&Key&Word&Sign&which&is&a&way&of&adding&sign&to&speech&and&ensuring&a& verbal&model&is&always&provided.&& Here&are&two&examples&of&Key&Word&Sign.&
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Choice&boards For&children&that&have&difficulty&choosing&between&different&acMviMes,&a&choice&board& can&be&a&way&to&promote&communicaMon.&Choice&boards&can&have&between&2&–&6& pictures&on&them&to&help&a&child&make&a&choice.&This&can&be&from&choosing&food&or&drink& they&want,&to&what&DVD&they&want&to&watch.& To&make&a&choice&board,&divide&a&piece&of&A4&paper&into&different&segments&(e.g.&half,& quarters)&(depending&on&your&child’s&needs)&by&drawing&a&thick&black&line&or&boxes.&Take& photos&of&the&objects&you&want&your&child&to&choose&from&or&use&pictures&from& programs&such&as&Boardmaker,&or&Clip&Art,&in&order&to&create&different&choices.&&You&can& put&these&in&Microsoc&Word&in&order&to&print&them.&Once&printed,&make&sure&you&cut& out&and&laminate&everything!&It&will&save&you&from&remaking&them&if&they&are& destroyed.& If&you&don’t&have&a&board,&you&can&just&hold&up&the&pictures&by&themselves&or&place& them&on&a&table&and&point.& When&using&a&choice&board,&ask&your&child:&‘Do&you&want& ____&or&______?’&whilst&poinMng&to&the&pictures.&For&a& verbal&child,&you&want&to&encourage&them&to&verbalise&what& they&want&even&if&it&is&only&part&of&the&word.&For&a&nonH verbal&child,&you&may&need&to&look&for&eye&gaze,&a&sign,&a& point&or&a&gesture&to&acknowledge&their&choice&and&then& model&a&word&for&them& (e.g.&‘apple’).& Here&is&an&example&of&a& simple&choice&board&and&a& more&detailed&board.&
Nepean Speech & Language Services
www.nsls.com.au
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VISUAL COMMUNICATION AIDS AND RESOURCES Non or Semi Verbal child or adult? Our good friends Heidi Heeman and Jacqui Little from the Resources for Special Needs Facebook Group have created this wonderful booklet to make life easier. It's all about Visual Communication, Ideas, Websites/links, Schedules, Product info, FREE downloads for PCS/PECS etc. TO DOWNLOAD THIS FREE BOOKLET FROM THE AUTISM WORLD MAGAZINE WEBSITE SIMPLY CLICK HERE Please feel free to share around.
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YOUR ALLY IN THE LIBRARY
BARBARA KLIPPER
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I never set out to become an autism professional…in fact, living with ASD at home, I was determined to have my work as a respite. But often life has different plans for us than we have for ourselves. Here’s what happened: My first son was diagnosed with what is now called ASD in 1986, when I was pregnant with my second son, who also later received the diagnosis. At that time the disorder was rare, less understood and with far fewer resources available. Like all parents, my husband and I did our best to cope and to find help for our sons. We enrolled them in special education preschools and therapeutic horseback riding, and we became active in our local branch of the Autism Society of American (ASA). It was there that we met a group of other ASD parents. When one asked if we were interested in being part of a delegation traveling to Canada to visit a unique school, we said yes. The parents who went on that trip then joined together to bring that program, Giants Steps, to Connecticut, and my younger son was one of the school’s first students. Our older son, who was progressing out of his need for such a specialised program, stayed in our local schools. My sons grew, and feeling I needed more time and interests outside of our home and family, I decided to go back to school.
I enrolled in a part time program leading to a Masters degree in library science, a field that fit my interests and inclinations and one in which part time professional work is available. After graduation in 1997, I got a job as a part time youth services librarian at our local public library, so I was able to balance work with my family responsibilities. I loved the work and having those few hours a week that I didn’t have to think about or deal with ASD…at least until 2001 when a local Mom’s request shifted my world. This mother approached the library’s president and asked him to consider starting a collection of books and other materials for parents whose children had disabilities. I was the only librarian in youth services with relevant life experience, and I was enlisted to work on what became the library’s Special Needs Center. My supervisor introduced me to Carrie Banks, Director of the Child’s Place for Children With Special Needs at the Brooklyn Public Library, who guided me through the selection of appropriate materials for the center and then became a close colleague and friend. My connection to Carrie and my involvement with the Special Needs Center led to my participation in disability awareness projects and groups for librarians nationally through the American Library Association (ALA). And then, in 2009, my autism life experience and my library experience came together.
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A local organisation whose programs my sons had participated in was interested in funding an inclusion program at the library, and I was asked to submit a grant proposal. I’d heard that a couple of libraries were doing a program based on sensory integration therapy, and felt that would be a great inclusive addition to the library’s storytime roster. My supervisor agreed, I wrote the grant proposal, and the library began offering Sensory Storytime. I had researched what other libraries around the country were doing for the grant and felt this information needed to be shared more broadly, so I proposed a conference program on Sensory Storytime programming to the children’s division of ALA.
That program, a panel consisting of three librarians and an Occupational Therapist who specialised in sensory integration, was a convention offering in June 2010. At the end of the program the acquisitions editor of ALA Editions approached me and asked me if I had ever considered writing a book on the subject. The answer to her question was “no, I had never thought about it”, but despite my trepidation, I said “yes” to the opportunity and wrote a proposal for a book that would include not only sensory storytime programming, but programming for children of all ages with ASD, as well as teens and families. It has been a three-year-long process, and the book that grew out of that conference presentation was released this January.
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Called Programming for Children and Teens with Autism Spectrum Disorder, it is a clear, simple guide that librarians, teachers and workers in community organisations can use to educate themselves about ASD and to program appropriately for our young people. I have shared some of the material in it with librarians through staff trainings and a webinar series, and have had the joy of hearing that families I’ve never met, in communities I’ve never heard of, have been able to successfully bring their children with ASD to their local libraries because of my work.
If you are an ASD parent or professional, you may not realise what a potential ally you have in your local library. Two librarians in New Jersey started Libraries and Autism: We’re Connected, a project that trains libraries in autism awareness and hosts a website that serves as a clearinghouse for information.
Some people would call the series of events that led to the book coincidence or serendipity or being in the right place at the right time and saying yes to opportunities as they presented themselves. Those of a more spiritual bent might say this was the path I was meant to follow, despite my original intentions. However you view it, the result is that more librarians are aware of and offering programs for our kids, and that our families are a little better understood and less isolated.
Go to your local library and talk to the librarians. Share my book and the Autism and Libraries: We’re Connected website and ask them to start a program for your child if they don’t already have one.
Resources like my book are now available to train librarians who want to serve your family but may not know how. So, here is an opportunity for you, and I hope you say “yes” to it.
You are likely to get a very positive response, and you may be surprised at how this enables you to open a new world of social and community involvement for your child, and your whole family.
You can buy Barbara Klipper’s book Programming for Children and Teens with Autism Spectrum Disorder via Amazon or ask for it in your local library.
See also the Sensory Story Tots Program designed by: Barbara Klipper and Gabriela Marcus,
Barbara Klipper
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Artwork by Jeremy and Rebecca Sicile-Kira www.jeremysvision.com
The Importance of Music By Jeremy Sicile-Kira
Music&has&always&been&an&important&influence&in&Jeremy’s&life.&&Here,&he&explains&why&that& is. Music&makes&my&life&feel&normal&some#mes&because&it&is&such&a&universal&language.&It&is& the&way&I&tend&to&sync&my&mind&with&my&body.&It&is&such&a&strong&package&of&feelings&that& are&involved&with&every&note,&and&I’m&sure&that&I’m&not&the&only&one&who&feels&that&way& about&it.&When&I&hear&music&I&feel&a&roller&coaster&of&emo#ons.&I&think&that&it&is&capable&of& making&you&&feel&things&you&haven’t&even&felt&before&in&your&life.& Music&can&make&anyone&feel&like&they&are&in&love&or&like&they&are&brokenhearted.&If&we& were&all&to&relate&love&to&a&song,&I&am&sure&every&human&would&have&a&song&picked&out&_&&no& maRer&what&culture&or&religion&or&belief.
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Different&notes&can&make&me&feel&different& emo#ons.&Low&pitched&notes&really&make& me&feel&like&love&might&be&truly&possible.&& High&pitched&notes&make&me&feel&like&I& could&go&&crazy&with&pain&and&sadness.& Great&rhythms&can&make&me&feel&like&life&is& freedom.&The&music&that&people&dance& salsa&to&has&a&great&rhythm.&When&I&listen& to&salsa,&I&am&just&really&thinking&about& how&the&sounds&are&making&mischief&on& my&soul.&&Good&harmony&is&like&a&sweet& girlfriend.&Vibra#ons&make&me&think&of& colors&that&feel&friendly.&Great&guitar&music& can&really&get&my&very&best&aRen#on& because&it&pulls&on&my&heart&strings.& Hearing&just&a&guitar&makes&me&feel&like&I& am&geeng&a&call&from&a&lover;&I&feel&in&love& and&I&am&happy.&The&frankly&great& vibra#ons&of&the&drum&can&make&me& feel&unusually&strong.Loud&music&gives&me& the&feeling&of&anger. I&have&great&respect&for&singers&that&can& make&me&get&teary_eyed&over&a&story.&The& song&“You&and&Me&Together&”&by&Dave& MaRhews&Band&makes&me&feel&the&lyrics& as&if&I&were&feeling&every&word&was&a&happy& beat&in&my&heart.&It&inspires&me&to&live&life& as&fully&as&if&I&didn’t&have&au#sm.& The&song&&“Blue&You”&by&Dave&MaRhews& makes&me&crave&to&be&in&love.&Jason&Mraz’s& song&“I’m&Yours”&makes&me&feel&happy& inside&and&cherish&all&the&people&in&my&life.& Because&music&makes&me&feel&emo#onal,&it& is&like&being&with&a&friend.
Good&music&makes&a&big&difference&in&my& life.&The&most&important&thing&it&does&is& help&me&to&sequence,&meaning&it&helps&me& to&know&the&order&of&steps&in&any&physical& ac#on&.&Things&like&the&steps&of&a&task,&the& right&way&to&move&my&body&and&how& quickly&I&react&rests&on&the&rhythms&I&feel& Music&can&remind&me&to&get&sequences& correct.&Listening&to&music&while&wri#ng& makes&the&flow&beRer&between&my&brain& and&my&body.&I&truly&think&that&music& preserves&&my&sanity&because&it&keeps&me& in&rhythm. Once&a&week&I&have&&a&Neurologic&Music& Therapy&&(NMT)&session.&&NMT&is&the& therapeu#c&applica#on&of&music&to& cogni#ve,&sensory,&and&motor&dysfunc#ons& due&to&neurologic&disease&of&the&human& nervous&system,&and&this&&helps&my&brain& organize&the&different&parts&of&my&body& (i.e.&upper,&lower,&arms,&legs).&&The& importance&of&&NMT&&for&me&is&&that&&the& different&parts&of&my&&whole&&body&&frankly& behave&like&they&are&separate,&and&&the& different&parts&seem&to&need&to&listen&to& the&same&&beat&&to&be&&able&&to&move& together&like&other&people’s&bodies&do.&The& NMT&therapist&helps&me&find&&my&inner& cadence. I&truly&believe&that&great&music&needs&to&be& evenly&balanced&to&keep&my&interest.& Evenly&balanced&music&is&composed&of&& great&rhythm,&lots&of&&guitar&and&drum& beats,&and&hardly&any&high&pitched&notes.& Really&the&best&music&is&very&kind&to&the& ears,&just&being&present&but&not&intruding& upon&your&thoughts.
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Jeremy’s&bio: Jeremy&Sicile_Kira&&is&an&ar#st,& writer,&advocate,&and&enjoys& traveling.& He&is&co_author&of&&A&Full&Life&with& Au#sm:&From&Learning&to&Forming& Rela#onships&to&Achieving& Independence&(Macmillan).& In&2010,&Jeremy&gave&a& commencement&speech&at&his&high& school&gradua#on&using&voice& output&technology.& Jeremy’s&advocacy&work&includes& serving&as&ARI’s&Youth& Representa#ve&to&the&United& Na#ons;&a&Young&Leader&for&the& AGI;&and&a&Youth&Advisor&to&the& California&Employment&Consor#um& for&Youth.& In&2007&he&was&highlighted&on&& MTV’s&True&Life&in&“I&Have&Au#sm.”& Jeremy’s&Vision&is&Jeremy’s&view&of& the&world&expressed&through& pain#ng,&wri#ng,&advocacy.&
Connect&with&Jeremy&@ www.jeremysvision.com&&
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Chantal$Sicile6Kira’‘s$newest$ book$is$the$revised$edition$of$ Autism$Spectrum$Disorders.$The$ new$title$is:$Autism$Spectrum$ Disorder:$The$Complete$Guide$ To$Understanding$Autism$(US$ edition,$Penguin,$January$2014).$$$
Click on the book picture to order via Amazon
Chantal’s other books: 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.
chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book
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Autism W rld Magazine
Join us on Facebook CLICK TO GO TO FACEBOOK
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18 + 1
What happens to your child once they turn 18? This is the question troubling many families.
72
Training by Malcolm Mayfield
Future Employment: - Reframe the parameters of success and failure. We need to rethink our doubts and self belief.
Autism World Magazine hopes to answer some of your concerns in our 18 PLUS Section.
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Any Way I Can by Bill Boutin
Bill’s mission to educate the community to try and make a positive difference any way I can.
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A Disabled Wage by Jocelyn Davis
What should someone on the spectrum get paid? Jocelyn argues for a fair wage for all.
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Future Employment: Part 6: Training
Malcolm Mayfield Managing Director Autism STAR Pty. Ltd
For the past six months, I have been exploring possible causes that could explain the AJ Drexel Autism Institute research findings that individuals with autism spectrum conditions have worse employment and independent living outcomes than people with other disabilities. I have left lack of training until last because it is a direct consequence of all of the previously explored causes of overwhelm, fear of making mistakes, lack of self-belief and societal perceptions of the labels of autism and Asperger syndrome. Two factors must be in alignment before effective training can be achieved; motivation and opportunity.
Motivation is directly affected by overwhelm, self-confidence and self-belief. Opportunity depends on one more ingredient for success; the cooperation of the individuals and organisations that are delivering the training. Therefore negative perceptions about the autism spectrum will create limited training opportunities for autistic individuals. We could spend our time debating allocation of blame. Should we blame the autistic individual? Should we point the finger at the teachers or the organisations that employ the teachers? Or is it the system that is “broken�? Indulging in such a debate will achieve nothing, because solutions are found in action, not in blame.
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But what about the many undiagnosed autistic individuals that populate the scientific, information technology and engineering sectors? They are highly trained and respected individuals who have contributed many of the great advances to society. Where do they fit into the overall picture presented by the Drexel research? The answer is in the word “undiagnosed”. One of the factors contributing to the Drexel findings does not exist for those individuals – the perception of society. The undiagnosed do not possess a label that is considered to be negative. Therefore such individuals have been mostly unimpeded in finding solutions to the other barriers of overwhelm, confidence and selfbelief. A problem is only a problem while a solution remains unknown.
So what is the solution to the problem of lack of training? The answer to that question is multilayered and draws strongly from solutions offered throughout this series: • Implement strategies to deal with overwhelm; • Concentrate on strengths to build a platform of self-confidence and expand from that foundation; • Encourage the view that mistakes and errors are necessary for learning and success; and • Open your attitudes and beliefs to encompass the concept that anyone and everyone has the right and the ability to learn and to expand, regardless of their labels.
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Temple Grandin talks about autistic thinking categories in her book, “The autistic brain”. She lists three main types of autistic thinking: visual, pattern and verbal.
Verbal thinkers could have difficulty creating links to subjects outside of their particular interests.
The visual thinker is proficient at creating visual constructs in the mind and imagination and excel at ‘big picture’ thinking. However, visual thinkers could have difficulty with subjects such as mathematics and music.
The above categories exist in all individuals, whether they are on the autism spectrum or not. The difference for autistic individuals is that the abilities in the above thinking categories will often be considerably more pronounced in their “natural” style and noticeably deficient in the other styles of thinking.
On the contrary, the pattern thinker will adapt to mathematical and musical concepts easily and readily and will often be able to observe and identify patterns in the world around them. Such thinkers could be more adaptable to learning social patterns and can therefore “blend” into social structures more readily. The pattern thinker will likely have difficulty with visualizing and big picture thinking.
Of course there could be so called islets of ability in a combination of the above. However, one of the above thinking categories will likely be stronger. It is to the strengths of thinking that training should be targeted first. Any further training can then be built upon strong and confident foundations.
The verbal thinker is the walking, talking dictionary who will be able to provide detailed and accurate facts from memory about the focus of their interest. Such individuals will be great at statistics and detail oriented fields.
The following is taken from “The autistic brain”, where Grandin suggests career matches against each of the three thinking categories:
Possible career paths by autistic thinking category Visual Thinker
Pattern Thinker
Verbal Thinker
Draftsperson
Engineer
Journalist
Photographer
Mathematician
Translator
Designer (craft/fashion)
Computer Programmer
Tour Guide
Graphic Designer
Musician / Composer
Specialty Retailer
Technician
Statistician
Accountant / Book Keeper
Auto Mechanic
Chemist
Historian / Archivist
Landscape Designer
Electrician
Technical Writer
Interior Designer
Scientific Researcher
Bank Teller
Plumber
Investment Analyst
Information Kiosk Attendant
Cartographer
Electronics Technician
Inventory Control
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Anyone can learn given the right environment. Therefore anyone can be trained given the right opportunity. Put aside limiting beliefs for understanding and acceptance. It is time that autism is allowed to shine.
Next month will be the final part of this series or future employment.
Malcolm%Mayfield Managing&Director Au/sm&STAR&Pty.&Ltd. www.au/sm;star.com Adelaide,&Australia
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 MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL Mayfield is co-author MAL MAL MAL MAL MAL MAL MAL MAL MALMalcolm MAL MAL MAL MAL MAL MALof “The Hidden Curriculum of Getting MAL MAL MAL MAL MAL MAL MAL MAL MALand MAL MAL MAL MAL MAL MAL Keeping a Job: Navigating the MAL MAL MAL MAL MAL MAL MAL MAL MALSocial MAL MAL MAL MAL MAL MAL Landscape of Employment.” 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 book MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MAL MALonMAL MAL MAL picture to order MAL MAL MAL MAL MAL
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Any way I can Bill Boutin, Lima, Ohio
I"was"seeing"a"child"psychologist"when"I"was" ten"years"old,"turns"out"I"had"a"diagnosis"at" the"time"of"Borderline"Personality"Disorder" (antisocial)"which"I"didn't"=ind"out"until"years" later,"so"I've"had"a"long"and"interesting"history" with"mental"illness." I"was"always"in"trouble"as"I"got"picked"on"a"lot" by"the"other"kids"because"they"knew"they" could"get"to"me."My"parents"and"teachers" were"all"very"disappointed"with"my"grades" not"being"as"good"as"they"should"be,"especially" because"I"was"so"smart"I"was"talking"and" reading"at"a"college"level"by"fourth"grade," another"thing"the"kids"picked"on"me"for" always"using""big"words.� I"was"in"the"Navy,"but"only"for"two"months"as"I" had"my"=irst""psychotic"break""there"and"got" kicked"out."I"worked"a"few"dishwashing"jobs," then"worked"at"a"bakery"for"a"couple"years" while"I"taught"myself"electronics."Finally"got" work"as"an"electronics"technician"for"a"few" years"until"after"repeated"depressions"and" hospitalisations"I"ended"up"on"disability. I"married"my"wife"Margaret"December"4," 1976,"we're"still"happily"married"with"three" kids"now"grown"up." Turns"out"I"have"Asperger's"syndrome"and" our"three"children"also"have"it."Robyn,"our" oldest,"died"in"April"2013"after"battling"cancer" for"many"years."
My"second"daughter"now"also"has"a"Bachelor's" in"Fine"Arts"in"graphic"design,"has"her"own" freelance"business,"and"our"son"Matt"has"a" Masters"in"Environmental"Science"from"the" University"of"Michigan. "From"1989"to"1991"I"was"involved"with"a" theatre"troupe"in"Connecticut"known"as"the" Second"Step"Players"which"uses"the" performing"arts"to"educate"the"community" about"the"myths"and"realities"of"mental" illness,"and"to"empower"survivors"through" creative"self"expression"in"their""Work"Hard," Play"Hard""program. I"have"been"struggling"here"in"Ohio"since" around"1995"to"start"a"similar"program," Creative"Sanity,"with"limited"success"as"stigma" and"discrimination"are"serious"problems"here," though"I"have"done"musical"performances," performed"some"skits,"and"had"been" published"in"local"newspapers"and"appeared" on"television. The"situation"for"survivors"here"in"Ohio"is"way" beyond"tragic"as"programs"have"been"cut"back" to"almost"nothing." I"am"fortunate"to"have"someone"to"go"to"for" counseling"through"my"church;"many"are"not" so"fortunate."I"am"still"struggling,"mostly"on" the"internet,"these"days,"to"write"and"to" continue"to"educate"the"community"to"try"and" make"a"positive"difference"any"way"I"can.
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Bill Boutin “find me on facebook�
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JOCELYN DAVIS - IN MY OPINION
A DISABLED WAGE Jocelyn Davis is the author of the children's book ‘There Will Always Be Love’, 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.
1#billion#people.# 15%#of#the#popula3on. Even#as#a#disabled#woman#and#a#person#who# advocates#for#my#fellow#disabled#persons,#I#had# no#idea#how#many#of#us#there#were.## There#are#1#billion#of#my#disabled#kindred#in#the# world.##We#come#from#different#countries,#we# are#different#genders#and#we#have#different# reasons#that#we#iden3fy#as#disabled,#but#there# are#one#billion#of#us.##According#to#the#United# Na3ons#Enabled#Factsheet#on#Persons#With# Disabili3es,#the#disabled#are#the#single#largest# minority#group#in#the#world. We#are#an#impressive#sized#group.### In#fact,#we#are#large#enough#that#in#preven3ng# our#access#to#goods#and#services,#whether#the# issue#is#not#having#appropriate#structures#for# wheel#chairs,#not#being#paid#an#equitable#wage# or#having#accessible#webpages#for#those#with# sight#disabili3es,#companies#and#single#country# economies#lose#out#on#billions#of#dollars#a#year# in#revenue.##
If#we#translate#that#to#the#world#at#large,#we#can# safely#assume#that#inaccessibility#is#blocking# trillions#of#dollars. Economic#inaccessibility#is#a#topic#rarely# discussed#in#the#mainstream,#especially#when#it# comes#to#those#with#disabili3es.#Although#we# represent#the#largest#minority#group#in#the# world,#we#are#also#more#likely#to#be#abused,# raped,#marginalised#and#otherwise#discounted# from#the#civil#rights#discourse#that#other#groups# engage#in#more#regularly.## Furthermore,#because#there#are#economic# safety#nets#in#countries#where#civil#rights# discourse#is#permiLed#for#the#disabled#(there# are#some,#such#as#this#example#in#Ghana,#where# it#is#not#permiLed),#the#prevailing#aQtude#is# that#the#economic#inaccessibility#must#surely#be# eliminated,#right? Unfortunately,#the#answer#is#no.##The#most# visible#example#of#this#comes#from,#arguably,# one#of#the#richest#first#world#countries#to#ever# exist.##
Autism World Magazine - 79
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The#most#discriminatory#prac3ce#of#the#United# States#that#enhances#economic#inaccessibility#is# a#concept#known#as#a#“Subminimum#Wage.”# Subminimum#wage#is#a#concept#derived#from# Sec3on#14c#of#the#Fair#Labor#and#Standards#Act# (FLSAY1938).##More#specifically,#companies#of#a# certain#size#may#apply#for#a#cer3ficate#that# exempts#them#from#paying#those#with# disabili3es,#whose#disability#inhibits#their# produc3ve#capacity,#minimum#wage.#It#allows# them#to#pay#lower#than#that.##The#current# minimum#wage#in#the#United#States#is#$7.25#per# hour,#so#how#far#below#the#minimum#are#we# talking?## Oriental#Trading#Company#–#Noted#as#paying# 11#cents#an#hour#to#one#employee Goodwill#Inc.#–#Noted#as#paying#some# employees#as#liLle#as#22#cents#per#hour Providence#Rhode#Island#–#Segrega3ng#and# paying#disabled#employees#an#average#of# $1.57#hour According#to#Advancing#Employment# Connec3ng#People#–#54#percent#of#those#paid# under#these#cer3ficates#(also#referred#to#as# sheltered#workshops)#make#less#than#$2.50# per#hour. Would#you#work#for#those#wages#when#the# minimum#wage#for#everyone#else#is#$7.25?## Before#answering,#perhaps#some#context#will# help. Let’s#take#the#average#pay#on#our#liLle#list,# $2.50#per#hour,#and#compare#this#to#minimum# wage.##If#a#person#making#$2.50#per#hour#works# a#full#40#hour#work#week,#their#gross#pay#will#be# $100.##
That#same#40#hour#workweek#would#garner#a# minimum#wage#earner#$290#per#week#in#gross# pay.##On#average,#a#person#making#minimum# wage#will#garner#290#percent#more#in#pay#than# someone#employed#under#a#tax#shelter. We#can#take#it#one#step#further,#if#we#take#the# most#famous#example#out#of#the#four,#the#22# cents#per#hour#that#Goodwill#pays#some#of#their# tax#sheltered#employees,#and#we#compare#it#to# that#same#minimum#wage#worker,#in#one#week# their#gross#pay#will#be#$8.80#and#this#is#before# taxes.###A#minimum#wage#worker#will#make#3295# percent#more#than#the#tax#sheltered#employee# in#this#example. In#the#US#the#minimum#wage#is#not#even# considered#living#wage.##A#living#wage#is#the# hourly#wage#needed#to#actually#live#off#of#what# one#makes.##I#live#in#one#of#the#poorest#areas#in# the#US,#with#one#of#the#lowest#living#wages#at# $9.00#per#hour,#which#is#more#than#4000# percent#above#what#the#Goodwill#worker# example#makes. How#is#the#prac3ce#of#paying#a#subminimum# wage#acceptable?##The#original#concept,# developed#in#the#1930s,#was#to#allow#for#the# disabled#to#be#hired,#under#the#now#archaic# belief#that#the#disabled#would#only#be#hired#if# employers#were#allowed#to#assess#their#“worth”# and#pay#them#at#that#level#instead#of#what# everyone#else#was#making.### Nowadays,#this#is#s3ll#a#jus3fica3on#for#its# usage.##Furthermore,#those#who#u3lise# subminimum#wages#also#cite#that#if#they#can’t# pay#the#disabled#these#small#wages#that#it# would#be#cheaper#to#send#the#jobs#abroad.##
Autism World Magazine - 80
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Some#even#take#the#path#of#Peter#Schiff,#ajer# 4:45#that#“You’re#worth#what#you’re#worth.” Some#cite#the#prac3ce#as#charitable.##Some# state#that#paying#disabled#workers#a#lower#wage# will#ensure#that#they#keep#their#disability# benefits,#(however#a#person#on#the#benefit# could#work#almost#full#3me#at#regular#minimum# wage#and#s3ll#retain#benefits. While#we#demean#areas#around#the#world#that# allow#the#prac3ce#of#extremely#low#wages,#it# appears#that#we#in#the#US##allows#the#disabled# to#work#in#condi3ons#and#at#wages#that#are# substandard.#Doing#so#while#ci3ng#“charity,”# “worth”#and#using#the#disabled#wan3ng# compe33ve#wages#as#a#straw#man#for#the# export#of#jobs#is#even#more#despicable. Remember,#there#are#1#billion#of#us,#and#even#in# the#richest#countries,#our#humanity,#our#worth# is#degraded#by#prac3ces#such#as#this. We#have#had#a#recent#victory#here#in#the#United# States.###
Ajer#intense#advocacy#from#several#groups#and# individuals#represen3ng#the#disabled,#President# Barack#Obama#signed#an#execu3ve#order#on# February#12#2014#increasing#the#minimum#wage# for#federally#contracted#employees#to#$10.10# per#hour#and#elimina3ng#the#tax#shelter#for#the# disabled#working#in#that#industry. It#is#a#step#in#the#right#direc3on,#but#we#s3ll# have#a#long#way#to#go.##There#are#s3ll#almost#1# billion#of#us#that#do#not#have#this#protec3on#in# place,#and#many#more#who#are#not#disabled# with#the#same#impediments#towards#economic# accessibility.## I#urge#all#readers#of#Au3s3c#World#Magazine#to# join#in#the#fight.##These#condi3ons#will#con3nue# to#be#seen#as#“charitable”#and#we#and#our#loved# ones#will#s3ll#be#devalued#by#a#perceived# “worth”#un3l#we#make#it#clear#to#our#society# that#we#are#human,#we#are#not#slaves#and#we# deserve#to#be#seen#–#and#paid#–#in#the#same# way#that#all#of#the#billions#people#on#this#planet# are.
What is your experience? Do you agree with Jocelyn? Do get in touch with us at AWM Email: story@magswest.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com
Autism World Magazine - 81
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Gemmill Gemmil GemmillGemmill
Killarnee Killarnee Killarnee Killarnee Killarnee Killarnee Killarnee Killarnee
Variety WA Variety WA
Variety WA Variety WA
Autism World Magazine - 82
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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:
Autism World Magazine - 83
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JOSEPH (AGED 14) - IN MY OPINION
MY FIRST 14 YEARS
published with the permission of Joseph’s mum
My name is Joseph, I'm 14 years old, and I have Autism. Growing up, my mother noticed something was different about me from my older siblings. I was extremely intelligent, I learned to read when I was about three or four-years-old, and I had an excellent memory. What’s odd was the way I socialised, the routines I had, and how badly I stuttered. I also wandered off a lot for a good three years. The way I socialised was asking questions that I already knew the answer to. I remember grabbing my mom's blue pajama pants and asking "are these blue?" I had to hug and kiss my mom goodbye a certain order before she was allowed to leave, or I would have a huge meltdown. I believe it was a little after my parents got divorced we moved to Florida when I was diagnosed with PDDNOS. I had just turned six-years-old. It wasn’t easy through. At seven my mom married another again. Nothing wrong with that, until he started abusing everyone in the household. By age eight, I was diagnosed with Autism, ODD, ADHD, and OCD.
I remember being the "demon child" of the household when I was diagnosed. I asked my mom "what is autism?" Her answer totally destroyed my confidence "its the reason you act this way". I know I was young but I was pro-cure already, even though I knew nothing other than what my mom told me. After my mom told my stepdad, things got worse. Every odd action, everything I said wrong, was punishable by giving me food that was against my sensitivities, wads of cream or cottage cheese alone, throwing away everything I had and, of course his beatings with the belt. He told me either my condition made me retarded, or I was just a bad kid. School was worse. I have suffered physical and verbal bullying for basically all of my life. My poor social skills kept me from making any friends. I was often rejected, but, no matter what I always tried my best to fit in. It hardly worked; I was always known as the freak. It didn’t matter what efforts I made or who I tried to impress. Social skills pulled me down the most. It kept me from making friends, made adults question my intelligence, and angered my family.
Autism World Magazine - 84
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Things started to get better when my stepdad moved out, but I still had meltdowns and nightmares almost every night when I thought of all the bad things he did to me and the family. One of the worst memories he left was how he tormented me about being Autistic. Knowing very little about my own condition, I decided to look for information on Autism. I realise now my gifts and weaknesses with this condition I carry. After I was satisfied with my research, I began to use groups on social media and became something of an Autism advocate. Things are gradually improving in my life. I’m learning the social skills I need to hold down a few really strong friendships and I have had three relationships this school year. The bullying I face is somewhat minor compared to what I’ve gone through in the years. Now I simply try to be nice to everyone, because I feel no one should have to go what I went through to learn acceptance. I wouldn’t say that “’I’m starting to turn normal”, I actually hate when people tell me that I don’t seem autistic. I’m just starting to find my place in the world; I guess that’s what everyone wants.
Autism slows me down a bit sometimes, no doubt about it. I’ve been bullied, abused, and rejected all my life. But honestly, I would rather stay the same in this cruel world and HUNT for my acceptance and friends than change and have friends and acceptance come to me. Some people need to realize that you cant run off looking for a cure when things get difficult. There was a time where I wanted a cure for everything that was different about me. Now I look back to all those years I was abused and I think "and then what if there was a cure? Would you live as normal and boring when it’s all over?" I believe that the cure to a miserable life with autism isn’t about curing the autism. What people fail to realize is that autistic children want to be happy too. I would say that a cure to a miserable life with autism would be surrounding yourself with people who can accept you as a unique person. I believe that people need to accept the gifts in their autistic children, and the autistic children in turn need to accept their gifts to ever be happy.
Autism World Magazine - 85
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The Autism Mode The word “autism” is an umbrella term to describe how one relates (or does not relate) to the world. When autism is viewed as an entity, a “thing,” professionals are then led to develop programs that seek to transform the person into something they are not, nor will — or can — ever be. This errant perspective may prove dangerous, as it can function as the impetus to alter the affected person by force, coercion or manipulation. If an American travels to a foreign country and knows nothing of the culture or language, he is bound to struggle. If an American travels to a foreign country having learned something of the language and culture beforehand, then relating to others and navigating one’s way become much easier. This illustrates the direction in which I believe that programs to aid autistic persons should be geared — not to change the individual, but rather to help them to be themselves, while also having an understanding of the “mainstream,” and being able to navigate within that realm.
by Dr Dan L Edmunds
In my approach, there are some core principles that I find of utmost importance: Presume intellect: Because a person is nonverbal or struggles with communication does not mean they are not intelligent or have nothing to say. Their unique strengths and passions must be explored and utilised. Behaviour is communication: In my opinion, the psychiatric community may be making a grave mistake when it simply seeks to “shut down” or suppress what it judges to be “unwanted” behaviors with powerful psychiatric drugs. Behaviors, even those which may be deemed “unwanted,” could be, for some, the only means to convey their needs or distress. Self-Advocacy: If professionals, friends, family members of the individual, and people at large wish to understand autism, there must be a willingness to enter the autistics’ world, not force them to enter the “public world” deemed acceptable. We must validate self-advocacy and seek knowledge about the autistic mode of being from those who actually live it each day.
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Autism World Magazine - 86
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Relationship: To help autistic persons forge emotional connections, make their way through the mainstream, and learn new skills, the keys are relationships. We all must be inclined to forge a bond with the person, to truly seek to understand his experience, unique world, and how he finds meaning — that is, to get to know the autistic individual as a fellow human being. Once a bond is forged, a common healing ground can be created. Respect: It is paramount for respect to exist and abound, which means that we do nothing to force, coerce, or manipulate autistic persons. They should be regarded at all times as being worthy of dignity. Again, the “outsider’s” role is to advocate for and support, not seek to modify the person into someone they are not, or need not be. I clearly remember a meeting with a five-yearold autistic boy who was nonverbal. He came into my office and began banging his hands on the computer keyboard. The secretary’s response, as is often typical in those with a lesser understanding of autism, was to immediately attempt to stop the behavior. Instead, I told her to let him continue.
There is a ball pit in the center of the room, and I told the boy that if he wanted to keep hitting the keyboard, I might have to pick him up and toss him into the ball pit. He continued, so I picked him up and tossed him in. He got out and immediately walked back over to the keyboard. This time, he did not pound the keyboard but outstretched his hands toward it and then fell back into my arms for me to toss him into the ball pit. He giggled and then spoke the words, “Do it again!” I was amazed. Relationship was at the key of this interaction, and an emotional connection was forged. I entered into his world, and he reciprocated and entered mine. Dr. Dan L. Edmunds is an existential psychoanalyst, psychotherapist, and autism specialist in Northeastern Pennsylvania, and a Diplomate of the American Psychotherapy Association. He holds many prestigious degrees, and is the author of "The Meeting of Two Persons: What Therapy Should Be" and "Being Autistic: An Approach Towards Understanding and Acceptance."
Dr. Edmunds can be reached for consultation at batushkad@yahoo.com
Autism World Magazine - 87
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from Heidi Heeman Autism World Magazine - 88
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Autism W rld
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Autism World Magazine - 89
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