Issue 19 / August 2014
essential reading for those who care
Autism W rld Magazine
THE CALMING SURF A Journey of Discovery Clowning Around Autism Awareness saved my son’s life Autism World Magazine - 1
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Autism W rld Welcome to the FREE PDF version of Autism World Magazine If you are opening this on an iPhone or iPod use the “Open in iBooks” option. For all other PDF Reader, please refer to your specific instruction manual. Or better still try our FREE APP on your device. Pictures labelled “Click on picture to play video” will take you to the video or download the file for playing. Any problems, send us
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HOW
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ABOUT THEM APPLES Victoria Mills .
Neo at the Carpicorn coast. He was standing like this for ages and I said, "what are you feeling Neo?" He squeaked and stayed like this. I asked him again and he said "veeeeerrrryyyyy happy" Â I knew of course he was happy but he preferred to show us with the pool noodle rather than verbalise (he can talk just fine when he wants to...) but it made me smile too when he verbalised his emotion. Vicky
:-)
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CONTENTS 10
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THE CALMING SURF Alicia Harrison Meet William. A boy who has a very special relationship with the water.
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ROYCE: AN UPDATE Jess Block Nerren We get the latest on our friend Royce and his cancer.
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UNDER THE BIG TOP Nichole Connolly The girl who followed her dream to join the circus.
30 ** HOW TO USE THIS CONTENTS PAGE ** CLINK/TAP pictures, numbers or text to jump straight to your chosen page.
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Publisher:
ISSUE 19 / August 2014
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© Copyright 2014 MagsWest PO Box 99 Mosman Park WA 6912
info@magswest.com
Autism World Magazine is available digitally and for fREE or iPad, iPhone, Androids, PC or portable device. Subscribe via the Apple Newsstand or Google Play Or CLICK HERE
Editor:
Iain Croft Website:
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04 HOW ABOUT THEM APPLES Neo’s big smile by Victoria Mills
63 THE GAPS DIET AND DAIRY Jacinta O’Connor
09 HOW ABOUT THEM APPLES Sensory Movie Day by Iain Croft
70 FOLLOWING DIRECTIONS Catherine Crestani and Diana Wolf
22 PUBERTY BLUES: OUR JOURNEY Deb Flintoff
76 PLANNING FOR EMPLOYMENT Megan HatJield
40 A GIRL WITH AUTISM Daisy Cox
84 SENSORY SMART ON HOLIDAYS Prue Watson
46 AUTISM LIFE SKILLS Chantal Sicile-‐Kira
90 FINDING THE GOLD Alyssa Aleksanian
56 UNSUNG HERO -‐ AUSTIN ORELLI Tiffany Fuller
facebook.com/ worldautism Front Cover William
STATEMENT OF POLICY AND DISCLAIMER ‘The views expressed in any articles included in this publication are not necessarily those of Autism World Magazine or the publishers MagsWest Pty. Ltd. Autism World Magazine and the publishers do not promote or recommend any specific therapy, treatment, institution or professional viewpoint. Please check with a doctor when changing any diet or major nutritional change.
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Editor’s Note Massive news this month. Having created, designed and put together what has evolved into Autism World Magazine 18 months ago - we have taken the huge step to transition the iMagazine to a FREE SUBSCRIPTION model. Autism World Magazine has always been a a not-for-profit publication and it is only through, subscribers and like-minded advertisers that can we continue to produce such a remarkable and forward thinking publication. I would like to take this opportunity to thank all those who have supported us up to this point with paid subscriptions. We are in the process of transferring you all to the Free Subscription.. If you take away anything from this month’s iMag, I do please ask that you all try and watch the video of William and the Calming Surf on page 11. Simply CLICK on the picture of Will and his dog Flynn. I am very proud and thankful of Will and his mum Alicia for working with me on this film for you all. It is very special to all our hearts and has already been the spur for a brand new Charity Organisation, StandUp.Foundation. Also in this bumper edition, we bring you an update on our friend Royce’s cancer, we take you on another journey of discovery with new columnist Deb Flintoff.. And we clown around under the big top. All this and so much more.. Enjoy.
iain iain croft editor and publisher iain@magswest.com www.facebook.com/worldautism
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HOW
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ABOUT THEM APPLES
SENSORY MOVIE DAYS BY IAIN CROFT
CLICK ON PICTURE WHEN ONLINE TO VIEW OUR
AMAZING VIDEO
http://youtu.be/7tgSXXiToR4 http://youtu.be/7tgSXXiToR4 http://youtu.be/7tgSXXiToR4 http://youtu.be/7tgSXXiToR4 http://youtu.be/7tgSXXiToR4 http://youtu.be/7tgSXXiToR4 Here is a chance again to watch our terrific video about Sensory Movie Day’s. For families to feel welcome while their children are free to roam around the cinema, stim and be themselves. This is a non-judgmental session and no need for families to feel uncomfortable. No diagnosis needed. Membership Cards are required to purchase tickets. To obtain yours contact sensorymovieday@hotmail.com
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THE CALMING SURF ALICIA HARRISON
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CLICK ON PICTURE ABOVE WHEN ONLINE TO
VIEW OUR AMAZING VIDEO
WORDS AND PICTURES ALICIA HARRISON VIDEO PRODUCED BY IAIN CROFT Autism World Magazine - 11
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"This is my son William, a bright, energetic and fun-filled five-year-old who has a love for the water. He will sit in the bath till his fingers shrivel and the water turns cold. William also has autism. Autism means something different to everyone. Our crazy world is full of unwritten social rules that come naturally to you and me. A simple conversation is so complex; in a few seconds you must interpret facial expressions, tone of voice, gestures, maintain eye contact, block out external stimulants, all the while trying to comprehend what the other person is saying. William is an extremely sociable boy who will do anything to please you, yet he struggles with peer-to-peer interactions. He can be the happiest boy on the block one minute and, the next, be in a complete hysterical state over something that seems so trivial, such as a slight change in routine. These ‘meltdowns’, where he looses all control and slips out of our world, can last for one, two, five or even 10 hours at a time. The ocean is magical, it is a place where William is weightless and hasn’t a care in the world. Surfing has brought Will a sense of freedom. He is more at home when he is in the water then when he is out. He has never once had a meltdown in the ocean. Sure, he has them before he gets in, but once he is submerged he is at peace. We often say that life would be so much easier for him if he could live underwater. When Will catches a wave, he gets a look of complete freedom. There is no effort in what he does, he doesn’t have to think, he just pops to his feet and he’s off. There are no social rules in riding a wave, although I wouldn’t put it passed him to drop in on you. The ocean doesn’t judge, it’s predictable and repetitive; every day life lacks all of these comforts. Alicia, William’s mummy." Autism World Magazine - 12
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“William has never once had a meltdown in the ocean�
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“the ocean doesn’t judge”
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THE AUTISM WORLD
NEEDS
YOU! Do you have a story to share to help the next generation of ASD families. Please contact us at Autism World Magazine: Email: story@magswest.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com
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AUTISM AND CANCER
AN UPDATE Jess Block Nerren
WE RECEIVED A MASSIVE RESPONSE TO LAST MONTH’S (AWM 18 JULY 2014) SPECIAL ARTICLE ABOUT EIGHT-YEAR-OLD ROYCE’S AUTISM AND CANCER, SO WE ASKED HIS MUM, JESS, TO GIVE US AN UPDATE. Autism World Magazine - 16
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“What’s the best news ever...?” That your kid (with autism) is cancer free and in remission from cancer. That, by far, is the best news we’ve ever experienced as a family. Ever. After one transfusion, two ambulance rides, four cycles of chemo, five trips to the ER, and 50 infusion center appointments is completely better. He has hair.
Two weeks into remission
He doesn’t have an IV. He doesn’t even have another doctor’s appointment for months. He swims and goes to camp and can play contact sports and rides a bike again. It is amazing and is truly a blessing that we were among the fortunate ones who respond to treatment so well. And I owe everyone reading this, in Autism World Magazine, a thank you. Because you helped get us through our journey with autism and cancer. Autism awareness helped get us through.
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Royce is my hero after seeing his strength and courage, but he likes to play it cool now that it is all over.
Says Royce of his experience, “I didn’t really do anything to be honest. Almost everything was hard but I’m not sad I had to go through it and I use my experience as a learning stone. Now I like to think about my future. I think a lot of stuff about my future every day like as a kid and as a grown up. I just thank all the people that helped me and made me feel better.”
There are so many little small things that are slowly getting back to normal. We tease him and we give him little bumps and say “Doctor’s orders, you can get a knock in the head now.” And we all smile and laugh because he wasn’t allowed to have heavy impacts with an IV line. We are still deciding how he wants to wear his hair now that he has hair again.
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Whether he wants to grow it long or keep it short, or go really long, in reaction to having been bald. There were incredible people that helped encourage Royce along the way. Two of them included his one-on-one school aide and his longtime best friend, who I’ll be honoring at an upcoming Autism Speaks event this month.
They don’t know yet, but I’m creating a local emergency support fund in their names that will immediately help others with a small financial gift from me and from Royce to one person in our area each year for four years (or hopefully longer if we can afford it!) to help smooth out some of the edges for families should they also be affected with autism and cancer. Autism World Magazine - 19
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My takeaway from this experience is threefold: One is that life is short and every day out of the hospital is a good day that deserves to be celebrated. Two is that any day we don’t need help is a day we can and should be giving help and encouragement to others. And three is that autism awareness is far more powerful that I ever imagined because autism awareness saved my kid’s life. Should you ever meet someone who may be skeptical about autism awareness, I encourage you to tell that person Royce’s story. You tell them my kid is alive because of autism awareness.
That he would’ve never made it past that first day, when he turned grey at school, if it wasn’t for autism awareness. And that he is better now because of autism awareness. That each person who helped him was able to do it better because they were aware of what autism is. This is a true testament to everything done by this amazing publication Autism World, and everything each of you as autism friends and family do every day to support and advocate for our kids. And that awareness saved Royce’s life and Royce and I thank you from the bottom of our heart. Jess xx
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Photographs in this article courtesy of Emily Kye and Jess Block Nerren
CLICK HERE To support the Children’s Hospital Los Angeles
In Australia to support Princess Margaret Hospital Perth. CLICK HERE
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Puberty Blues with Deb Flintoff
Deb Flintoff is a passionate advocate for children on the autistic spectrum and their families. Her extensive personal experience and knowledge of systemic procedures and policies, has allowed her to positively engage and empower other families to navigate through their daily lives and plan for the future.
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OUR JOURNEY Deb Flintoff
“What a Journey of Discovery What pearls of wisdom I would find What lessons I would learn From just one minute… …in your mind” Deb Flintoff 2010
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Nearly 18 years ago, in the throws of labour, one exasperatingly jovial midwife remarked, “If you think this is hard, just wait till the teenage years.” At that point, the teenage years were the furthest thing from my mind. Now it’s a different story.
However, for some teenagers, like my son, who have a disability or special need, the transition process will require careful planning, forethought, guidance, support and vision by parents and caregivers who support them daily.
Nearly 18 years later, our babe is a funny, quirky, loving, ‘nice’ (as he would say), tall teenager who is in the process of transitioning into the world of young adulthood. For many teenagers, this transition process is often taken for granted. Graduate from school, find a good job, travel, go to university and maybe move out of the family home. Adulthood will present challenges, opportunities; be a time of selfdiscovery and freedom for some, confusion and angst for others. Mistakes will be made and rectified. This is how we learn. It is all part of becoming an adult.
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At the end of the day, the most overwhelming key to a child’s success is the positive involvement of parents', former Arizona Governor Jane Dee Hull wrote.
If parents are not equipped to guide and support, nurture and provide a positive influence to their children, the transition to adulthood is bound to be burdened with more hurdles.
Parents and primary caregivers are in the position to be the most powerful influences in their children’s lives, irrespective of whether disability is present.
Education, awareness and knowledge are the key. If parents and caregivers are armed with the tools to help plan and prepare for their children’s future, the transition pathway should be a lot smoother.
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My son is now 17 and in year 12 in the Education Support System. Having worked in the disability sector as well as being a parent of a child with Autism, my knowledge base is quite extensive. My husband and I have been planning for Josh for several years. Over time his interests have broadened, his personal needs have evolved, his appetite has grown immeasurably and his behaviours have waxed and waned.
His world is driven by his favourite animated characters, he is extremely literal and very much a creature of habit. He is essentially a happy soul, whose biggest plans involve finding a PC game of “Wall-e”, the Disney Pixar animated recycling robot, flying to Melbourne with mummy in September for our annual trip to see family and living with mummy and daddy forever and ever and ever.
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We, as Josh's parents, are aware that these goals alone are not sufficient enough on which to build a viable plan for his future. However, they are wonderful building blocks upon which to base a relevant and person-centred plan which will evolve with him during this fast approaching time of growth and change.
Josh is blissfully content living in his own beautiful thoughts, which is exactly why our careful planning will benefit and enrich this very important time of transition, from his tender teenage years to the next phase of his life as a young adult.
Deb Autism World Magazine - 27
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UNDER THE BIG TOP NICHOLE CONNOLLY
“I don’t know if I picked that circus, but something told me that circus picked me”-‐ ‘Jacob’ -‐ Water for Elephants
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I think with every story the best place to begin is at the beginning. My love affair with circus began when I was 14 in my hometown of Caloundra, in Queensland, a beach town approximately an hour north of the state capital, Brisbane. The circus was set up at the Australian Rules Football fields in North Street.
My mum had taken us children to see the show but I suppose, as a naturally curious child, I wanted more. While the circus, the world renowned Ashton Circus, was in town I was able to visit. I remember vividly running around and playing with the kids of the show.
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From then on I never quite got that out of my mind; what I wanted to do when I finished school changed numerous times but my love affair with circus persevered. Whenever the circus was nearby I would visit them and eventually I was given small tasks such as collecting tickets. I loved spending time with my second family.
Many years later, after I finished school, I would travel with the show to help out in places such as the Sunshine Coast, Brisbane and the Gold Coast. I was taught to do jobs, such as putting up and pulling down the big top, and was given things to do during the show. By mid-2012, I was living in a one bedroom apartment in Caloundra, occasionally spending weekends away with the circus.
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Clowning around with Grandpop
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Part of me wanted more. I knew this was what I wanted to do, so when I was asked if I wanted to move out to the Lockyer Valley and work with them full-time, I jumped at the opportunity. I packed my furniture and large belongings into storage and arrived at one of our jobs in Brisbane with a few bags. Today under the watchful and very understanding eye of Tanya Falagan, a sixth generation performer from the Ashton Circus Family and her parents, Gary and Lorraine Grant, I am learning the tools of my trade so to speak. NICHOLE AND TANYA
During the show I help with props and perform in Nana and Grandpop’s (as I lovingly call them) acts. I am learning the art of clowning from Grandpop and love performing in his magic act as well as Nana’s whip cracking act. I love watching her perform and love holding paper in my hand and mouth (yes you read that correctly) while Nana splits them in half with her whip.
I have also begun to perform static trapeze (though I have a long way to go). Recently I have fallen in love with plate spinning and hope to develop it into an act alongside working on my body conditioning and static trapeze and assisting Nana and Grandpop with their acts.
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When we are not performing I assist Tanya in teaching at the Lockyer Valley Circus Arts (based in Laidley in the Lockyer Valley), The Grid in Toowoomba and various schools throughout the Lockyer Valley. I am learning a lot of things that don’t come naturally to me due to my Asperger’s, such as communication, eye contact, social skills and my own fine and gross motor skills. Tanya is very patient, understanding; she is an amazing person, mentor and coach who was willing to give me a go. She has become like a second mum to me. I love the teaching side of my job. With the love and support of my circus family which, even with the challenges of my Asperger’s is willing to teach me (even if sometimes they have to explain how to do something a million times), I am excited to see where my future takes me.
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A message to Nichole from Alice-Marie Henderson whose daughter Monique is on the spectrum. Thank you so much for aiming for the stars. My daughter Monique was captivated by the circus and that you too are an Aspie, like her, and wow look what you can do!
You are amazing. As plain old mum, I can tell her she can be anything, but you, my shinning light, are showing her she can be anything. Thank you.
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A GIRL WITH AUTISM DAISY COX
I'm Daisy and I was seven when I was diagnosed with autism.
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I remember as a child going to many different appointments and then finally after what felt like to me 300 visits I was diagnosed. I remember all the different appointments even to this day and how I listened to all the different people try to find out what was wrong. Those were hard days for me even though I think I understood that having a diagnosis was a good thing. The days that followed my diagnosis were both a relief, as I first received classroom funding and then a learning aid who was a great help. I also found it very difficult to get through every day life. I was a very aware, emotional young girl
who really didn't know where she fitted in. I think the one thing that really got me through school and different social situations was finding that one thing that I could concentrate on, for me that was reading. I loved being in a different world and I guess in a way I felt like books wouldn't judge me and would always be there. I grew up with a sister who is three years my junior and a loving mum and dad but I at only sevenyears-old felt like I was disappointing them. I remember crying out of sheer desperation because I really didn't want to act or behave the way I did which I knew upset my parents.
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Today I am 22-years-old and with some help I finished school with an A grade average and went on to get a full time job, attend university and volunteer. I like to think that I am a productive member in my society in one way or another. Autism for me will always be with me and sometimes a bit of a challenge to suppress but I've learnt some great techniques to manage the slight OCD and other challenges that I can face everyday. What would I say to newly diagnosed autism families? Keep going, it gets better and your child/children is so grateful to you for all your love and support! Daisy Cox Queensland, Australia 'Be the change you want to see in the world'Â
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Au#sm Life Skills 10 Essen#al Abili#es for Children with Au#sm by Chantal Sicile-Kira
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Teacher: “What are your greatest dreams about your future?” Jeremy: “I want to have my own house with roommates, good friends, a fun job and be learning.” Teacher: “What are your greatest fears about your future?” Jeremy: “That I will not have enough money.” Teacher: “What barriers might get in the way of accomplishing your goals?” Jeremy: “You know I need good helpers. I need people that respect my intelligence.” -Interview with Jeremy Sicile-Kira Transition Year 2007-08
The above conversation took place six years ago while Jeremy was still in a transition program, before graduating from the local high school at age 21 with a full academic diploma
Jeremy at 25 is now on the cusp of having his greatest dream come true: he is moving into an apartment with a roommate, and he is paying his share of the rent through his painting and consulting. www.jeremysvision.com/).
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CLICK ON PICTURE BELOW WHEN ONLINE TO WATCH JEREMY’S GRADUATION VIDEO
http://youtu.be/O8cEtand01w http://youtu.be/O8cEtand01w http://youtu.be/O8cEtand01w http://youtu.be/O8cEtand01w http://youtu.be/O8cEtand01w http://youtu.be/O8cEtand01w Reaching his dreams did not happen overnight for Jeremy. It took many years of advocacy and preparation. Jeremy and family had to advocate for him to be provided the 24/7 supports he needed by the powers that be. Jeremy had to prepare for living an adult life with autism in the way he envisioned as described in our book, A Full Life with Autism (Macmillan).
By learning life skills that most neurotypicals take for granted. It took many years of patient work by many people, none who worked harder than Jeremy. When Jeremy was a teenager I wondered how to best prepare Jeremy for the adult life he envisioned.
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Artwork: by Jeremy Sicile-Kira www.jeremysvision.com
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I also wondered what we could have or should have done differently when he was younger preparation for adulthood starts at an early age by learning muchneeded life skills. This led me to think: What would today’s adults on the autism spectrum point to as the most important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.
The result of these conversations and e-mails became the basis of my book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin). Published six years ago, the needed life skills have not changed, and the information is still pertinent today. Although some areas discussed with adults on the spectrum seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all: Making Sense of the World (Sensory Processing); Communication; Safety; SelfEsteem; Pursuing Interests; SelfRegulation; Independence; Social Relationships; Self-Advocacy; and Earning a Living.
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Making Sense of the World: Sensory Processing
These life skills will be discussed over the next three months in my articles here, starting with Making Sense of the World.
Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom.
Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. It’s a fact that babies and toddlers first learn about the world around them through their senses.
Yet, for many, sensory processing difficulties are a lot more complicated and far reaching.
Therefore, if these senses are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.
For example, Brian King LCSW, author, and life coach for parents of children on the spectrum, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.
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http://www.jeremysvision.com
Donna Williams, Ph.D., author, artist, and autism consultant had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna discusses about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas.
Setting their cell phones to ring every two hours to prompt them to use the restroom helps them to avoid embarrassing situations. It was not until Jeremy was asked to go through the experience of a ‘sensory scan’ by the Autistic Global Initiative did those of us supporting him realize his intense sensitivity to smells. We always assumed that he left certain places because of his sensitivity to lighting and to noise.
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HOW
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ABOUT THEM APPLES Chantal Sicile-Kira .
You know you've done a good job when your young adult tells you for the first time as you are leaving on a trip, "mom, I won't miss you�.
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Situations such as this one remind me that just because Jeremy can communicate does not mean that he will. Often times Jeremy assumes that we ‘see’ the world the way he does and does not give us important information that we can that help him to self-advocate about in terms of his needs (i.e. requesting support staff to not wear scented body lotion or perfume on their shift). Many adults interviewed found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.
The most helpful strategies were knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, and placing a scented balm under their nose to counter unwanted smells. Having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload) is key for many on the spectrum. Undergoing auditory and vision therapy is life-changing for some, as well as are desensitization techniques. Teaching children on the spectrum how to handle sensory processing challenges that interfere is one way of preparing them to reach adulthood and fulfill their dreams.
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Next month, in Autism World Magazine, Chantal Sicile-Kira will be covering the life skills of Communication; Safety; Self Esteem; and Pursuing Interest. Chantal Sicile-Kira is an award-winning author, advocate and speaker on autism. She is the founder of AutismCollege.com, which provides practical information to parents and educators. The author of six books, Chantal writes regularly for Autism World Magazine. At the invitation of Autism World Magazine and Autism West, Chantal will be coming to Australia in October and November. CLICK HERE FOR MORE DETAILS
Chantal’s other books: Autism Spectrum Disorders; Adolescents on the Autism Spectrum; Autism Life Skills; What is Autism? Understanding Life with Autism or Asperger's. and her newest title the revised edition of Autism Spectrum Disorders. The new title is: Autism Spectrum Disorder: The Complete Guide To Understanding Autism (US edition, Penguin, January 2014
Click on the book picture to order “A Full Life With Autism”.
chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book chantal’s book http://autismcollege.com/book/ http://autismcollege.com/book/ http://autismcollege.com/book/ Autism World Magazine - 55
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Unsung Hero - Austin Orelli by Tiffany Fuller Austin Orelli is 20 years old, has autism and is my brother. I would like to nominate him because he is an amazing inspiration to everyone he meets. He is a wonderfully talented artist and the most cheerful person I have ever met. He wants everyone he comes in contact with in a day to ‘just be happy and smile’. He is always willing to try new things, loves to travel and be an "animal explorer". He calls himself a famous artist and I am just trying to make that a reality for him. Austin does work.  Technically it is volunteer work and he needs a job coach. I am his job coach right now. We also have a lot of art shows and fundraising events where he sells his art. Really he is just the face of the art business, I do the selling.
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Austin works one day a week at a zoo in our area, one day a week at a cat rescue shelter and two days a week at Petco (a pet store).
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Our business is called The Art of Autism. We are in the process of changing it to The WildLife of Autism. This is why our website and Facebook are different. We live in Williamsport, Pennsylvania. Austin's major delays are with communication. He has a hard time some days not repeating everything someone says instead of having a conversation. I do not think he will ever be completely independent. He does not really understand the concept of money and bills, he doesn't drive and he is still a little nervous about using the oven.Â
CLICK HERE TO NOMINATE YOUR UNSUNG HERO Autism World Magazine - 58
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www.theartofautism.com Facebook.com/thewildlifeofautism Autism World Magazine - 59
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Need someone to talk to?
24-Hour Autism Hotline
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The Autism Advisory and Support Service (AASS) runs a 24-Hour Autism Hotline which is staffed by parent volunteers who have children with Autism. You can call any time of the day or night, from anywhere in Australia, to chat to someone who can offer service and guidance from a parent's perspective. Whenever you call AASS you are speaking a parent of a child with Autism so you know that you are talking to someone who understands what you are experiencing. Parents and carers waiting for a formal assessment and diagnosis, looking for the right intervention and joining the long waiting lists can be extremely overwhelmed, confused and frustrated. AASS will help with unbiased advice, encouragement, guidance and support. If you get the answer-phone please leave your number and a message. We will call you back. Autism World Magazine - 60
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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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The GAPS Diet and Dairy Jacinta O’Connor Jacinta O’Connor Nutritionist Naturopath Certified GAPS Practitioner MINDD Practitioner Additive Alert Presenter Kardinya, Western Australia
People often step into the GAPS Diet having tried a ‘Gluten Free and Casein Free Diet’ and seen improvements physiologically and behaviourally and wish to take dietary intervention a step further. When a suggestion is made to reintroduce dairy products, after a level of gut healing work has occurred, people are naturally a little hesitant. When milk is properly fermented, a large percentage of proteins get pre-digested, immunoglobulins get broken down and lactose, the milk sugar, is consumed by the fermenting microbes. Furthermore, the fermenting bacteria produce lactic acid which assists in soothing and healing the lining of the gut, many vitamins and active enzymes.
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From a GAPS perspective, should dairy be included, and if so, how and when? It is recommended, at some point in the GAPS Protocol, to remove dairy for a period of six weeks. When you reintroduce dairy it is recommended you do so slowly and in small amounts. If you are experiencing constipation, it is best to start with high fat dairy such as ghee or clarified butter. Ghee Ghee is pure milk fat which contains virtually no milk proteins or lactose. Start with small amount, such as one teaspoon, and gradually increase. Once ghee is well tolerated, you can introduce unsalted butter, and then sour cream fermented with a yogurt starter. Allow around six weeks between implementing ghee and reintroducing butter and a further six to twelve weeks for introducing sour cream. The fatty acid profile of sour cream is brilliant for assisting with constipation. For those with persistent constipation, a GAPS Milkshake is often indicated.
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GAPS Milkshake Recipe First, ferment cream to make sour cream (crème fraiche) using the following recipe:500 ml cream Starter - 50 ml yogurt (or 50 ml fresh kefir milk or 2 Tbsp kefir grains – once kefir is tolerated) Mix yogurt or kefir starter with cream. Cover with tea towel or cloth and leave for 24 hours on the kitchen bench, maintaining a temperature of 20C. Once fermented, refrigerate. Note: If you have used kefir grains, you will need to remove the grains.
Next, make your GAPS Milkshake:2 Tbsp of homemade sour cream (when tolerated) ¾ cup of freshly pressed juice (add water to bring it up to ¾ cup if you are yet to tolerate ¾ cup of juice) 2 – 3 raw egg yolks Mix it all in a blender.
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After ghee and butter have been well-tolerated for six-eight weeks or for those experiencing diarrhoea, high protein dairy, such as yogurt and kefir, should be introduced. It is advisable to start with yogurt as it has fewer probiotic strains than kefir, making it less probiotically potent. Start with small amounts of yogurt, 1 tsp, and increase slowly, as tolerated. The yogurt should be homemade and fermented for a period of 24 hours at 20C, to ensure all the lactose, milk sugar, is taken up in the fermenting process. Most store bought yogurts are only fermented for 7 – 9 hours so still contain lactose. Many people cannot tolerate store bought yogurt, however can tolerate their own homemade, longer fermented, yogurt. Once one cup of yogurt per day is tolerated, introduce kefir. Kefir is probiotically stronger than yogurt, containing many beneficial yeasts. For those with a yeast overgrowth picture, kefir needs to be introduced very slowly and in very small amounts. For some, a yeast picture may include one or more of the following: athletes Foot, foggy head, inability to focus or think clearly, altered decision making, outbreaks of thrush, skin issues, a strong desire for sweet, starchy and refined foods.
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Introducing large amounts of kefir can result in exacerbation of the original symptom picture due to what is known as the die-off effect. When probiotic microbes kill opportunistic or pathogenic microbes, those pathogens release toxins which your body has to process. Die-off symptoms are quite individual. They are often seen as exacerbation of original symptoms, or fatigue, muscle-ache, headache nausea, darkness under your eyes , etc. When die-off symptoms are experienced, it is important to significantly reduce your probiotic intake for 3 - 4 days while symptoms settle. It is important to manage your die-off response. It is your body’s way of saying it is not coping with the toxins released from the death of pathogenic microbes. Healing needs to be aligned to what your body can cope with. Once ghee, unsalted butter, sour cream, yogurt and kefir have been successfully implemented which may take well over 12 months, homemade cheeses and matured cheeses such as brie, camembert, gorgonzola, blue cheese, Edam, mature cheddar, parmesan and Romano can be introduced. Start with one mouthful only. For many sensitive people, dairy does not need to be out of the diet forever. As the gut lining starts to heal and seal, many GAPS patients, who used to react to dairy, successfully reintroduce dairy products.
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Homemade yogurt Yogurt or yogurt starter Milk If you are using a yogurt starter, please follow the instruction on the packet. If you are using existing yogurt as a starter, Gently warm milk to 38C. Remove from the heat source. Add yogurt in a 1 to 10 ratio. For example, to make a fresh 1.1L batch of yogurt, add 100 ml of yogurt to 1L of milk. Stir and place in yogurt maker jars. Ferment for 18 – 24 hours. ENJOY
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Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and Nedlands, Western Australia nutritionmatters@ozemail.com.au
GAPS™ is the registered trademark
of Dr Natasha Campbell-McBride. Each month in Autism World Magazine Jacinta O’Connor takes you through some of the practical steps to help GAPS work for you and your family. And if you are using GAPS send us an email and let us know how you are going. support@magswest.com
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Improving and Following Directions with Catherine Crestani and Diana Wolf
Children with ASD vary in terms of their ability to remember and carry out instructions. Following directions is an integral part of a child’s receptive (understanding) language development. Difficulties in this area may be for a range of reasons. The most common reasons include that children do not understand what is being asked of them or they may not understand the concept. For example, they may not understand the concept (e.g. in, first, before) that is embedded in the instructions.
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Children may also have difficulty with completing instructions due to poor attention and memory skills. This greatly impacts their ability to participate in the classroom setting as well as at home. Some strategies to trial with your child include: Gaining your child’s attention before asking them to do something by limiting distractions; Using simpler language including short sentences and direct requests (e.g. put your toy in the box). If the instruction is long break it into two/three shorter ones; Using visual cues as well as facial expression (e.g. pictures, gesture); Use stress to emphasise the key words (e.g. Get you HAT and go OUTSIDE); Put the key words at the end of the sentence (e.g. Get your BAG); Ask the child to repeat what they have to do; If your child is having a lot of difficulties with following instructions, it is important to have their hearing checked to rule out any possible hearing difficulties. Difficulties with attention can also impact on their ability to follow instructions so consult a dietician and/or paediatrician for further advice. Playing games like ‘Simon says’, ‘Follow the leader’ and ‘What’s the time Mr Wolf?’ are great games to get your child involved in following directions.
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Use simpler language including short sentences and direct requests (e.g. put your toy in the box
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Catherine & Diana Catherine Crestani and Diana Wolf are Principal Speech Pathologists at Nepean Speech and Language Services, in Penrith NSW, Australia. Diana has more than 21 years of experience and continues to thrive on learning new ways to provide intervention to children. Catherine’s passion is for early intervention, including supporting children with ASD. www.nsls.com.au
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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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18 + 1
What happens to your child once they turn 18? This is the question troubling many families. Autism World Magazine hopes to answer some of your concerns in our 18 PLUS Section.
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Planning for Employment by Megan Hatfield Teens with Autism Spectrum Disorder often find the transition into employment very difficult. Unfortunately this means that many people with ASD who are more than capable of working don’t have jobs. Luckily, this is now being recognised as a big priority, and there is some exciting new research that will start to address this issue ... and they need your help.
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Planning for Employment Megan Hatfield
Megan HaLield, from CurNn University is part of a team that is developing a tool that will assist adolescents with high funcNoning auNsm or Asperger’s Syndrome to plan what they will do when they leave school. In the long term, it is anNcipated that this will lead to an improvement in the employment rate of people with high funcNoning auNsm and Asperger’s Syndrome.
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Who can participate?
What does it involve?
We are looking for people who: Have high functioning autism or Asperger’s Syndrome, and Are in years 9-12 at high school or left high school in the last 5 years We are also looking for the parents/carers of these adolescents/young adults, and the professionals who work with them (i.e. teachers, therapists, career guidance officers, disability employment service providers, etc.)
We are asking you to complete an anonymous survey (15 minutes long). You can also participate in a year long study in 2015. More information Please read the attached information sheets for further information about this study before completing the survey If you have any questions or would like some more information, please contact Megan 0402 200 636 or megan.hatfield@curtin.edu.au
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Thank you for your time and consideration. Kind regards, Megan
To complete the survey, please click on the links below:
Megan Hatfield PhD Candidate School of Occupational Therapy and Social Work Faculty of Health Sciences Curtin University
For parents/carers: CLICK HERE For adolescents or young adults with high functioning Autism/ Asperger’s Syndrome CLICK HERE: (Recommended that this is completed with support from someone like a parent, teacher or support worker) For professionals CLICK HERE:
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The Autism CRC This project is a part of the Cooperative Research Centre for Living with Autism Spectrum Disorders, otherwise known as the Autism CRC. The Autism CRC is a national coordinated research effort looking at improving the lives of people with ASD at all stages. It is a collaboration between four states; Western Australia (WA), Queensland (QLD), New South Wales (NSW) and Victoria (VIC).
This project falls under Program 3: Finding a Place in Society which focuses on adults with ASD. It is the first national research project of its kind to comprehensively address post-school outcomes in adults with HFA/AS. In the past, less than 1% of all research investment in ASD has targeted post-school initiatives. Not only is this a series of state-of-the-art studies, but it will also have enormous benefits for people with ASD, their families, and for the broader Australian community.
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For more informa=on about the Au=sm CRC :
www.au=smcrc.com.au/
CLICK ON PICTURE BELOW WHEN ONLINE TO
VIEW VIDEO ABOUT THE CRC
http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw http://youtu.be/cTLPULk6ugw Autism World Magazine - 81
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IMAGINE...
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Email: contact@magswest.com Autism World Magazine - 82
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IS RDI FOR YOU?
with Prue Watson
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BE SENSORY SMART ON HOLIDAYS Prue Watson
OT RDI Certified Consultant Queensland Australia
When thinking about this topic I asked a parent Megan about being Sensory Smart when thinking about vacations. Megan has a child who is extremely Sensory Defensive and with a Praxis Difficulty. I knew her family had been recently exploring ways to have more successful holidays with their children.
Megan shared this advice, “I think there is a fair bit to consider, not just the place. I think timing and the duration are crucial. For instance, plan to go away in the first part of the vacation so that there is time to come back home and relax before the vacation is over. Also the distance travelled and the type of accommodation available is an important factor.
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www.ASensoryLife.com
Another vital part of going away on vacation is to do some research. Have a look at the place online and phone ahead to find out more than what the website tells you. Sometimes you need to ask questions or voice concerns that are applicable to your family.� I was also reminded of the good advice that comes from Angie of www.ASensoryLife.com who educates about Sensory Processing Disorder. She reminds us that Sensory Processing difficulties impact a child’s ability to tolerate and accept sensory input in the environment on a constant basis. A child may seek out sensory input or avoid it, or a combination of the two.
Her tips for being Sensory Prepared for Holidays are good Keep in Minds. Holidays can be good opportunities to be more in tune and engaged together so maybe use this time to be more mindful of how you connect with your child, how you help your child tune in to you by engaging in small roles with you – holding hands and sitting and walking together, carrying a bag together, enjoying an ice cream or drink together, chanting a familiar song together, jumping the waves together, running or rolling down the hill together, and just slowing down so you and all the family can explore and notice things together.
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So, Think about and plan your trip. Be selective about how much you want to do/see/achieve comfortably. You can always go back and visit again to do more. Research your destination and familiarize yourself with the area you want to visit.
Look at several accommodation options and choose the most comfortable for your family. Follow up with a phone call to raise any concerns/queries about your family’s specific needs before you book. If you are going to be doing a long road trip, make sure you have a DVD player hooked up so the kids can watch movies and be distracted from the journey - it helps with the “are we nearly there, yet?” refrain.
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On a long road trip, have regular breaks as well as overnight stops. Stay in family-friendly accommodation that is in a quiet location, yet close enough to a supermarket so that you can self cater, especially if your family is on a restrictive diet. Choose a destination that has places of interest to visit. Try not to take on too much in a day.
If your morning is busy, take time to relax in the afternoon, and vice-versa. Focus on enjoying time spent with family rather than filling the day with activities. Keep it simple. Sometimes the best part of the HOLIDAY is swimming in the hotel pool and not necessarily the outing to the zoo. Megan Van Blerk Parent, Prue Watson OT RDI Certified Consultant, Queensland Australia May 2014
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Suggested Reading http://www.amazon.com/ gp/product/B00J4OVUJ8/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00J4OVUJ8&linkCod e=as2&tag=autismoz-20 www.amazon.com/gp/ product/B00J4OVUJ8/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00J4OVUJ8&linkCod e=as2&tag=autismoz-20h ttp://www.amazon.com/ gp/product/B00J4OVUJ8/ ref=as_li_qf_sp_asin_tl?
My Baby Can Dance: Stories of Autism, Asperger's and Success Through the Relationship Development Intervention (RDI) Program
Prue Watson Occupational Therapist RDI® Certified Consultant Connect and Relate for Autism Inc Director RDI® Australian Training Centre connectandrelateforautism.com.au
www.pruewatson-ot.com.au
http://www.amazon.com/ gp/product/B00IRD9RME/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00IRD9RME&linkCod e=as2&tag=autismoz-20 http://www.amazon.com/ gp/product/B00IRD9RME/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00IRD9RME&linkCod e=as2&tag=autismoz-20 http://www.amazon.com/ gp/product/B00IRD9RME/ ref=as_li_qf_sp_asin_tl? The RDI Book ie=UTF8&camp=1789&cr By Steve R. Gustein, Ph.D. eative=9325&creativeASI CLICK ON THE LINKS OR BOOKS TO ORDER VIA KINDLE Autism World Magazine - 88
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Finding the Gold  Alyssa  Aleksanian
Replacing the Medical deficit based Model of ASD
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I was diagnosed on the Autism Spectrum ASD as an adult in my 30s. Since then I have devoured all manner of writings with an AS flavour, from research papers to autobiographies to fictional accounts of characters with autism. All in an attempt to find some kind of road map; that is, to better understand my brain and its different wiring, and how to best interact with the peopled world. There is such a bewildering array of ideas out there; such a diverse range of writings with differing points of view, everyone coming from their own perspective with an accompanying agenda.
I feel it is very important to keep in mind when trawling through information on ASD, that can, at times, be contradictory and confronting, something Donna Williams has said: “If you know one autistic person, you know one autistic person.” There are phrases and specific terminology one frequently comes across in the ASD literature. Many Autism World readers will be familiar with them: Triad of impairments, cognitive dysfunction, disorder, mind blindness, weak coherence... The list goes on. All with a bias implying the ‘abnormal’.
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What I had read in my research on ASD did not fill me with hope. That is, until recently, when something extraordinary happened I came across a book called Aspies on Mental Health, edited by Dr Luke Beardon of Sheffield Hallam University (UK) and Dean Worton . In the introduction written by Dr Beardon, I found a different tone, a quality of genuine compassion which is absent from so much research on ASD. The doctor’s words, his ideas, his voice, out of all the so-called ‘experts’ I have read, is the only one I believe that comes close to fathoming the AS psyche. He has made a breakthrough: a connection to, and understanding of the Aspie mind, where the other ‘experts’ have fallen short. He seems to have made the brave decision to actually listen to those with AS.
Most researchers have observed the AS mind from the distance of their sanctified petri dishes (as if a brain scan or a blip on a machine can tell more than a thousand words, a touch or a story of longing), but Dr Beardon has attempted to engage with the Aspie heart, soul and very creative mind. The notes that he hits are exactly what we with AS have been waiting for. http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html http://www.shu.ac.uk/faculties/ds/education/theautismcentre/publications.html
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Dr Beardon writes about the current ASD terminology, the PNT (predominant neuro-type) misuse of language and the accepted medically-based deficit model of ASD, and how this has the potential for enormous damage to an autistic person’s self-esteem and long-term mental health. The term, from the newly renovated DSM-5 ‘Autism Spectrum Disorder’ http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS http://www.amazon.com/Marcelo-Real-World-Francisco-Stork-ebook/dp/B0032J0IFS
personally fills me with despair. That word: disorder. Who has a right to make that judgment call and blanket all those with AS with it? At this point, it is pertinent to mention a line from a fabulous fiction book, Marcello in the Real World, by Francisco Stork whose Aspie character redefines his gift of ASD not as a disorder but as ‘excessive attempt at cognitive order’. Why can’t we, looking from the inside out, choose our own term? Let’s celebrate diversity and the very real gifts that AS brings. In such a spirit, I intend to take a stand and change the word disorder to Difference. A better term: Autism Spectrum Difference. Just because certain unique souls don’t unravel their mysteries at the first prod and poke of science does not mean they are deficient. It just means some patience is required.
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When it comes to the science of studying the mind, we need to cease labelling things that we don't (yet) understand as ‘disorders’.
It should be made abundantly clear that those of us with AS do long for a genuine connection with others, we are just not very good at it.
Dr Beardon also writes that those with AS do not necessarily exclude themselves from the world simply because their inherent autistic nature demands it. It would be more accurate, he suggests, that the PNT environment is so alien, so distressing, that those with AS have learned the price of immersion in such a world is a price not worth paying. So, in an effort to maintain some semblance sanity, they step away.
The Dr also questions the whole ‘lack of emotion’ idea. As evidence, the entire book, Aspies on Mental Health is filled with heartfelt responses to living with AS. Stunning creative examples that prove an AS life is capable of subtlety, significant meaning and emotional nuance.
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From my own experience, I have seen it time and time again that those with AS typically feel far more acutely and can react with more emotional intensity than many PNTs. Just because we do not easily express what we feel, does not mean we do not feel. ‘Lack of empathy’; ‘lacking theory of mind’? Dr Beardon addresses these notions directly in a further article called Is Autism really a Disorder? He suggests that individuals with autism can demonstrate excellent theory of mind. A quote: “In many cases, the level of understanding can be of a very high level, and appear totally intuitive. In fact, I have met some individuals who appear to communicate empathically nonverbally, which could be seen as a very well developed theory of mind.”
As a primary school teacher, I have often witnessed such empathic, non-verbal communication between children with AS. In addition, when I am working with AS children in the classroom, it takes just a look, a slight gesture of my hand or a light touch for them to know exactly how to proceed. No words need be spoken. The only time I have to use words to any great extent with these children is when another child has upset them and I have to bring their mind back to safety. Another point Dr Beardon raises is about sensory sensitivity. It can have such an emotional and mental impact on someone with AS, but its effects are not often taken into account. It is startling that sensory overload is so understudied in AS, as it is the one thing that makes the AS life unbearable. We can learn to be content alone, we can cope by avoiding game-playing people, but trying to prevent the noises and overwhelming sensations of a toorapid world is becoming increasingly difficult.
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“A genuine attempt to ‘walk into our shoes’”
click to see more sneakers’ art
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Practical help, research and education of health professionals and educators about this issue, could dramatically reduce the meltdowns and shutdowns caused by sensory overload. As a teacher, the spectrum students I come across show the above traits in various permutations, but nevertheless, in blindingly obvious fashion.
I recommend Dr Beardon’s writings to everyone living with or close to someone with ASD. Read his book, Aspies on Mental Health, and then pass it onto someone else. All these tiny steps we make, can make a real difference to how ASD is seen: Autism Spectrum Difference.
It is easy to make adjustments for a child with AS in a classroom (and interestingly, implementing most adjustments such as reduced lighting, noise levels, and visual cues, benefit the entire class).
Living in Sydney, over the other side of the world to Dr Beardon, I don’t believe I will ever have the chance to meet him, but if by some chance I do, I am determined to overcome my AS reticence for touch, and give him a great big hug.
However, I am constantly coming up against research into autism that seems to be a repetition of the old, tired ‘ASD deficit model’.
When autism is seen as a gift of difference not disorder, his work will be seen as visionary, I am sure of that.
This is why Dr Beardon’s writing so caught my eye. It is fresh and new.
See also: Beardon, L (2008). 'Is Autism really a disorder part two theory of mind? Rethink how we think'. Journal of Inclusive Practice in Further and higher Education, 1: 19–21
A genuine attempt to ‘walk into our shoes’ and find the hidden gold.
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Diagnosed on the Au=sm Spectrum at the age of 35, Alyssa Aleksanian is a primary school teacher in Sydney, Australia For the past few years Alyssa has been a strong advocate for listening. As a primary school teacher, she makes it her priority to listen to those children with ASD in her care, not just observe. Alyssa says, “I personally find those arBcles wriCen f r o m t h e ' i n s i d e r s perspecBve' as it were, are far more accurate and helpful to carers and loved o n e s t h a n t h o s e c o n s t r u c t e d f r o m t h e observaBon of researchers. All theses children with ASD a r e n o w g r o w i n g u p , becoming adults. Let's ask them what it is like being them! What a mine of informaBon to draw and learn from!” She holds a Masters degree in Teaching, as well as a BA in ConservaBon of Cultural Materials and a BA in Visual Arts (yes-‐ like most with ASD it has taken me a while to figure out what employment worked for me!). You can see more of Alyssa’s art at alyssaaleksanian.com
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