Issue 21 / October 2014
essential reading for those who care
ON TI IP L E CR LAB BS AI SU AV EE W FR NO
Autism W rld
Super Mario World Fun at the fair? The problem with choices! Autism World Magazine - 1
Autism W rld Welcome to the digital version of Autism World Magazine We hope you enjoy our terrific free autism resource and share it with your friends. You can either read this version online or download to your device. Or better still try our FREE APP for iPad, iPhones or Androids. Pictures labelled â€œClick on picture to play videoâ€? will take you to the video or download the file for playing. Any problems, send us an email at contact
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UNSUNG HERE Tanya Harris Super Mario world is Tye's world
AUTISM LIFE SKILLS With Chantal Sicile-‐Kira
SHOW TIME Natalie Burton and Heidi Brandis Having fun at the fair
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ISSUE 21 / October 2014
© Copyright 2014 MagsWest PO Box 99 Mosman Park WA 6912
Autism World Magazine is available digitally for iPad, iPhone, Androids, PC or portable device. Subscribe via the Apple Newsstand or Google Play Or CLICK HERE
Iain Croft Website:
autismworld magazine.com Facebook:
facebook.com/ worldautism 07 HOW ABOUT THEM APPLES Valerie Foley
62 BUILDING FRIENDSHIPS Catherine Crestani and Diana Wolf
21 HOW ABOUT THEM APPLES The Calming Surf
68 WATER SAFETY Larry Houser
22 PUBERTY BLUES -‐ CHOICES Deb Flintoff
74 DOWN THE RABBIT HOLE Alyssa Aleksanian
46 CARING FOR THE CARERS Lily Holland
82 ODYSSEY WITH AUTISM Maria Iliou
54 THE GAPS DIET Jacinta O’Connor
Front Cover Super Mario & Tye
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 Welcome to Autism World Magazine. This month we bring you tales of from the fun fare. You know the scenario, the fare, show, circus huge event comes to town and everyone wants to go. We give you some tips and suggestions for making the day a little easier or all concerned. Award winning author, speaker and leader in the AS field, Chantal Sicile-Kira gives us more Autism Life Skills. We meet Tye (our front cover hero) and his amazing communication method through Super Mario. “Choices Are Confusing. Decisions Are Hopeless”, begins Deb Flintoff in her Puberty Blues column - so how can we make our choices easier to handle? Lily Holland helps us with a little mindfulness and Alyssa Aleksanian takes us ‘Down the Rabbit Hole’ to discuss the delicate subject of depression. And so much more... Remember Autism World Magazine is now a totally FREE SUBSCRIPTION model. You can download our App for any phone, tablet or portable device and then subscribe for FREE from within the App. For those downloading our digital issue simply fill in the form BY CLICKING HERE. Or find us on ISSUU issuu.com/autismworldmagazine Enjoy...
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ABOUT THEM APPLES Valerie Foley
Today, Billy could sit in his own backyard without earmuffs for the first time in a very very long time. It took an ongoing unpleasant exchange of emails with a neighbour with horribly barky dogs, but it happened. We are happy. Autism World Magazine - 7
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Itâ€™s a typical scenario played out at fun fairs, festivals and huge events across the world. The IGA Perth Royal Show is Perth, Australia's biggest community event which attracts 400,000 visitors every year. There are rides, animals, fireworks, sideshows, showbags, noise and crowds and crowds of people.
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So what is the best way to navigate such a massive event with a child/ren on the autism spectrum? We asked Natalie Burton and her family to give us some feedback.
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On Monday (a public holiday) we planned our trip to the show with Jayar (10-years-old with autism, ADHD and anxiety) and Jemma (eight).
We arrived mid morning to find parking very difficult around the venue; where we live it is not possible to use public transport.
I don't do social stories and don't over plan. We just jump in. I have found this works way better in situations that I can't control.
After driving for a bit we found one, suitable walking distance from the gates. The key is to find an entrance gate away from the crowds.
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This year we entered near the dog pavilion better as crowds aren't bad and if the young fellow is stressed, hot, bothered that pavilion is air conditioned and full of very friendly dogs and owners. So off we set, in not a big hurry, but to keep Jayar happy our first stop is always the police display.
This never fails to entertain him; this is his obsession. It is always different every year. We spent most of our day checking out displays pavilions (secretly looking for the scrapbooking displays for me).
Maremma Sheepdogs Autism World Magazine - 14
The baby lambs in the sheep/wool pavilion were great, more room than the baby nursery. Jayar and Jemma equally love the Scouts display and this year the laser tag they had set up were right down Jayar's alley. Both kids spent over two hours there. It is a job well done by the local Scouts. We go with a budget so I take no cash or credit cards as you can very easily spend a lot of money on things that are not needed. Sideshow alley is always a tough part and years gone by we avoid it, but if you head there just after 2pm it is fairly quiet. Jayar and myself do not do rides. But we did go on a family ride on the ghost train. The experiences an event like this can provide is great; I know it is hard to relax but I find I enjoy the day more.
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Jayar’s viewpoint: “The show was crowded and mum and I were happy to see the show, I couldn't watch when dad and Jemma went on the rides. I don't like rides like the Graviton - not my type of ride. “Thanks for reading the magazine.”
Jayar and mum Natalie
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TOP TIPS FOR FUN FARES BY HEIDI BRANDIS 1.
Buy ticketS before you go (GENERALLY cheaper with express entry).
Use your Companion Card or Carers card (if you can) for free entry for one carer .
Always ask if kids 12 and under are free.
Arrive around 20mins before gates open, find Express Entry lane (not ticket line)... Any earlier and you risk a meltdown. Any later and long queue to deal with.
When you go in, Go on a ride or buy a treat or a showbag (kids choose) straight away while no crowds around. Instant gratification and distraction from anxiety.
Let the kids decide what happens after that for as long as you/they can cope and as much as you can afford.
Find quiet areas or Mother's Room for rest breaks as needed for drinks, food and loo breaks (and to check out the showbag contents if distraction required)
Take lots of water, few snacks, hats, sunscreen, jumpers or rain jacket - we needed them all today.
If there's anything you want to see or do, go another day!
If in doubt phone the organiser before you go to check on all facilities for your special need.
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“phone ahead to check facilities”
“ﬁnd quiet areas for rest breaks”
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Heidiâ€™s daughter enjoying the tea cup ride Autism World Magazine - 20
ABOUT THEM APPLES THE CALMING SURF
CLICK ON PICTURE WHEN ONLINE TO VIEW OUR
http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s Here is a chance again to watch our terrific video The Calming Surf. Supported by the StandUp.Foundation Autism World Magazine - 21
Puberty Blues with Deb Flintoff
Deb Flintoff is a passionate advocate for children on the autistic spectrum and their families. Debâ€™s extensive personal experience, with son Josh and knowledge of systemic procedures and policies, has allowed her to positively engage and empower other families to navigate through their daily lives and plan for the future.
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CHOICES Deb Flintoff
"Choices Are Confusing. Decisions Are Hopeless."
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Yesterday, at a cafe, I was faced with the agonising lunch decision of choosing between an olive, rosemary and rock-salt bagel or an onion and garlic bagel topped with creamcheese. Recently on holiday, (when supposedly 'calories don't count'!), I was faced with the quandary of having to choose between a donut, cronut or bronut, as I couldn't possibly eat all three... or could I ...???
In the end I bought one of each and shared. If choice is in fact a "conundrum" as the old saying goes for people who are not on the Autism Spectrum, how do people like my son cope with the agonising and often daunting everyday act of having to 'choose', especially when the all options are favourable.
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“Don’t bother my head by asking conundrums, I beg of you. Just let me discover myself in my own way.” 1816, Jane Austen, Emma, Vol. 1, Ch. 2
For people on the Autism Spectrum, choice is very much a learnt behaviour which can at times be excruciatingly overwhelming, daunting and well, as Josh says 'confusing'. If having the ability to choose, allows us the ability to feel in control over a situation in an environment which caters to our needs, how in control must someone feel who has to make a decision in an environment which is not necessarily conducive to the surroundings, routine and structure required for them to feel grounded and in control of their own life situation.
How are we as caregivers, encouraging and allowing our children to 'discover themselves in their own way', as stated by Jane Austin, when our role is to assist, guide and support our children to make decisions which will be deemed appropriate in a world which is often foreign to them and their own individuality? How is that their ‘own way’? Is the right choice, their own or what we think is best for them? So many questions. So many conundrums.
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white or milk freddo?
The decision over whether to have a giant white or milk chocolate freddo, or whether to use the iPad or Laptop are everyday decisions which may seem painless and obvious to us, but to Josh they can cause huge amounts of stress, anxiety and confusion. Deciding between two clear options, one he does like and one he does not, such as
watching a favourite Disney movie or a game of football, there is no competition. Ask which disney movie and then we are faced with an exclamation of "choices are hopeless". This is usually accompanied by a non-verbal gesture of throwing his arms up in the air accompanied by a perplexed look of uncertainty on his face
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If good choices lead to a favourable result or reward and bad choices may result in an error of judgement or consequence, how do we rationalise to our children the reasoning behind choosing between favourable options? For Josh, it is all about the age old concept of "K.I.S" - Keep it simple. Limit the options to help him make the right choice to suit his need, whilst endeavouring to keep the decision making process conundrum free.
Do you have a story, about the teenage years, to share to help the next generation of ASD families. Please contact us at Autism World Magazine: Email: firstname.lastname@example.org Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com
Deb Autism World Magazine - 27
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: email@example.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com
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Autism Life Skills Chantal Sicile-Kira
10 Essential Abilities for Children with Autism In previous articles, we have explored the life skills of sensory processing, communication, safety, pursuing interests, selfesteem.
This month, award winning author, Chantal Sicile-Kira takes us through her final set of essential life skills, based on interviews with adults on the autism spectrum for her book, Autism Life Skills.
Robin by Jeremy Sicile-Kira
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â€œAutistic persons have many sensory-processing issues that stand in the way of being flexible. People with autism are extremely sensitive to noise, lights and many times touch. I need direct instruction about what the rules of expected behavior rare in the different environments.â€? Jeremy Sicile-Kira, A Full Life with Autism Autism World Magazine - 31
Self-Regulation Self-Regulation is a necessary skill for taking part in community life.
Even if it does not make sense to the adult, whatever the child is feeling is true for him or her.
Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response.
Various methods can be used to help them become more selfaware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break.
Dena Gassner, MSW, who was diagnosed as an adult, says it is necessary for children to be able to identify their â€˜triggersâ€™ and that parents and educators should affirm to the child that whatever he or she is feeling is important.
As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.
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Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realise and accept that they will be parenting for a lot longer than parents of neurotypical children. Zosia has a point, but I never thought I’d still be discussing certain self-care issues when my son reached a quarter century. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters.
Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly nonverbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People) and my son, Jeremy. However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are nonverbal.
When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning (able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.
Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance— what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.
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Self-Advocacy Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.
Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell, was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.
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Earning a Living This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society. Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Aspergerâ€™s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.
My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customised employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some. Currently, Jeremy is earning money from his painting; a talent he did not uncover until he was 23. He is a good example of a â€˜late bloomerâ€™ when it comes to discovering what gifts he had to offer that people might want to pay him for.
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Artwork: by Jeremy Sicile-Kira www.jeremysvision.com
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â€œequal parts love, acceptance and expectationâ€?
In Conclusion In retrospect, there are different choices I could have made in raising and educating Jeremy these past 25 years. However, after conversations and e-mails with many different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.
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Chantal Sicile-Kira is an award-winning author, advocate and speaker on autism. She is the founder of AutismCollege.com, which provides practical information to parents and educators. The author of six books, Chantal writes regularly for Autism World Magazine. We are also really excited that, at the invitation of Autism World Magazine and Autism West, Chantal will be coming to Australia in October and November -‐ See Xlyer on next page.
Click on the picture below to order any of Chantal’s books
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AUTISM: The Whole Child Conference 2014 Understanding and Supporting people with Autism Spectrum Disorders. For Parents and Professionals.
Perth / Kalgoorlie / Busselton
Autism West is excited to present award-winning author, speaker and leader in the field of autism, Chantal Sicile-Kira, at the Autism: The Whole Child Conference 2014.
“If you are accepting of the belief that life can be good even with autism, then your child will think so, too. You are the most important person in your child’s life, and you can make them believe that anything is possible.” Chantal Sicile-Kira - 2013 Top Ten Autism Blogger and Social Healthmaker (Sharecare) Chantal has been involved with autism spectrum
disorders for over 25 years as both a parent and a professional. She is a tireless advocate for those on the
Why me? Things I wish I’d
autism spectrum, the author of five books about autism
and founder of the American Autism College (www.autismcollege.com). Chantal’s presentations are informative, positive and entertaining. This is an event not to be missed.
Transition teenagers to adulthood Ten essential abilities every child needs and deserves to learn Question & answer time
Autism: The Whole Child Conference, November 2014 Perth
Ascot Race Course, Ascot
Bayview Geographe Resort, Busselton
Sunday 2nd November 10.00am-4.30pm
Wednesday 5th November 10.00am-2.30pm
$100 Parents and Professionals
$60 Parents and Professionals http://www.trybooking.com/Booking/ http://www.trybooking.com/Booking/ Tickets available at www.trybooking.com.au/101024 Tickets available at www.trybooking.com.au/101471 BookingEventSummary.aspx? BookingEventSummary.aspx? eid=101024 eid=101471 Perth Kalgoorlie Railway Motel, Kalgoorlie
James Nestor Hall , Catholic Education Office,
Monday 3rd November 4.30pm-8.00pm
50 Ruislip St, Leederville
$50 Parents and Professionals
Thursday 6th November 4.00pm-6.30pm
http://www.trybooking.com/Booking/ Tickets available at www.trybooking.com.au/101464 $60 Teachers and Educational Assistants Tickets available at www.trybooking.com.au/101856 http://www.trybooking.com/Booking/ BookingEventSummary.aspx? BookingEventSummary.aspx? Food and drink is included in participant cost for all conferences. 10% fee reduction for Autism West financial members. Registrations close Friday 24th October Conference supported by Enquiries to 6389 1833/ firstname.lastname@example.org or on the day 0414 167 345. Autism West’s web address: www.autismwest.org.au
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Become a Full or Professional Member of Autism West Filling the gaps in Western Australia
Autism West offers the following paid 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
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Unsung Hero - Mario and Tye by Tanya Harris My son TYE was non- verbal. Until I spoke through the one thing that's makes him happy and puts a smile on his face. "Super Mario" is my unsung Hero. Thanks Nintendo and "MARIO" for helping me to communicate with my son.
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I found a way to communicate with my son using the different plush dolls from Nintendo. Â He loves to talk through them. So I select one and talk to him through them. It just put the biggest smile on his face.
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â€œHe loves to talk through themâ€? Autism World Magazine - 44
Tye’s Nintendo inspired bedroom
TO NOMINATE YOUR UNSUNG HERO SIMPLY CLICK HERE OR EMAIL: STORY@MAGSWEST.COM AND DON’T FORGET TO SEND PHOTOS
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CARING FOR THE CARERS
MINDFULNESS with Lily Holland
Lily Holland is a Sydney-based Counsellor/Psychotherapist. Her son Lewis was diagnosed with an Autism Spectrum Disorder in 2006. Lily provides both a mother's perspective and counsellor's listening ear and support.
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CARING FOR THE CARERS
How Mindfulness Can Help You - really
I’ve been talking about Mindfulness for quite some time. I’ve been practising it myself for quite some time before that, and introducing it to clients to help with varying degrees of stress.
I’m going to use an example from my own journey with Mindfulness to illustrate how raising our self-awareness can indeed help us to regain control of our own nervous system.
Though very simple in itself, Mindfulness can be difficult to explain… and to show how it will actually help.
Let me say, I consider myself someone with a fairly high level of selfawareness. I’ve been doing all this stuff for quite a while now. I’ve also been using a particular Mindfulness technique every morning (or most) mornings, for many years.
Many of us can be in such states of high alert, it’s difficult to see how the act of stopping and paying attention to your inner state, and doing this often, throughout the day, might indeed help matters. I can see how it may seem a little far-fetched to some.
Nothing has come close to the level of control I’ve gained over my stress levels, since having made a discipline of one simple little Mindfulness technique.
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CARING FOR THE CARERS
This is something that happened to me one day: I was standing in a queue in the bank. There were roughly six people ahead of me (I was counting) and only two tellers operating.
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CARING FOR THE CARERS
I was very pressed for time as usual, and it was one of those days where the world around me seemed to have slowed down while I was on full speed. I could hardly contain my agitation.
And around and around I went - counting the people in the queue - annoyed that each teller seemed oblivious to the queue of people waiting. I pumped myself up and up and up…
Have you ever felt like this? I counted the people in front of me again. I looked back at the tellers. One seemed to be having a chat. A chat! Taking her time and having a personal chat! Slowing things down even MORE! The other one seemed to be staring at her computer screen for the longest time… as if maybe it was her first day and she was still training.
I stopped dead in my tracks (my thoughts).
WHY WAS EVERYONE GOING SO SLOWW???!!!
What was I doing to myself? I could feel my heart thumping BA BOOM, BA BOOM, BA BOOM. I became mindful of my inner self quite suddenly, and realised I had pumped myself up to a frenzied full and bursting. I was quite stunned. I simply stopped… and amazingly… things around me began to move faster.
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CARING FOR THE CARERS
I thought about it for a while afterwards. How long had I been doing this to myself? This horrible feeling that everyone around me was going so slow was not a new thing at all. How could I have been so unconscious of this terrible and unhealthy habit? Me?! With all my selfawareness!? The patience of a saint in my sessions with clients; but a crazy lady on speed when I’m rushing between tasks. This had to change.
And so began my mindful waiting; in the bank; in the supermarket; on hold on the phone; in traffic (okay, maybe not in traffic yet). Anyway, you get the picture… Calming myself down on the inside that day in the bank, felt like I was trying to stabilise a big bowl of water… it really only took a minute or so to settle that frenzied energy. I simply stopped, because I became aware of my inner self. There are of course times when it is very, very difficult to regulate the body’s stress responses.
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CARING FOR THE CARERS
Until recently I had almost forgotten how distressing it is when one’s child has a huge meltdown. I noticed then that my heart went on its own little speedy way no matter how mindfully aware I became. My mind and my heart were not talking, and all I could do was notice it, accept it, and hope that it would change very soon. It did. And I’m sure that paying attention to it did help. The point is, we have much more control of what’s going on if we make a point of being aware of what’s going on - on the inside. Stay connected to what’s going on in the body. Practising simple
Mindfulness techniques daily… throughout the day if possible, builds up the awareness so that we are more conscious of what’s going on inside. Here’s some links to some Mindfulness techniques: sf-act.com/docs/ resources_harris.pdf And please check out Dr Libby Weaver on The Science and Impact of Rushing at: www.drlibby.com/news/ science-impact-rushing/ And … remember that your children need you to take very good care of their main carer - you! It is just as important as (and another way of) taking good care of them.
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CARING FOR THE CARERS
Lily Holland Counsellor/Psychotherapist. Lily practices in Randwick and Parramatta, NSW, Australia. She is also available for telephone or Skype/FaceTime appointments. Contact: firstname.lastname@example.org or 0402 888 097
Got a question for Lily? Or a subject youâ€™d like her to discuss? An experience to share? Email us at email@example.com
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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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Supporting the GAPS Diet Gut and Psychology Syndrome (GAP Syndrome or GAPS)™
Jacinta O’Connor is a Nutritionist * Naturopath * Certified GAPS Practitioner * MINDD Practitioner * Additive Alert Presenter
‘Nothing happens un/l the pain of remaining the same outweighs the pain of change.‘ Arthur Burt The GAPS Diet is a truly amazing foundation for healing. It is hard work. You may feel like you will never be able to leave the kitchen constantly making stock, fermenting, preparing soups and stews and always having an enormous pile of dishes with which to contend. Once your GAPS routines are established and your child’s health, behaviours and mood begin to improve, it will all be worth it. (And there will still be another pile of dishes waiting for you).
with Jacinta O’Connor
GAPS – Gut and Psychology Syndrome & Gut and Physiological Syndrome) ‘GAPS TM is the registered trademark of Dr Natasha Campbell-McBride
‘Let food be thy medicine and medicine be thy food.‘ Hippocrates
GAPS is a powerful, food-based protocol to re-inoculate the gut with beneficial microbes and heal and seal the lining of the gut. Parents of children with ASD often start to eliminate foods from their children’s diets to make a difference in their health. First it may be gluten, then dairy, then soy in the hope of finding the triggers. In the meantime, the child continues to limit the foods he or she willingly eats.
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Jacinta runs fermenting workshops and monthly support groups
Their sensitivities may increase. More foods may be removed from their diet. This picture often continues until they start to reinoculate their gut with beneficial microbes and heal and seal the lining of their gut. Some of you may have read about GAPS and thought, â€œYou have to be kidding! My child only eats five foods - crackers, cheese, white bread, pizza and pasta. This will never work.â€?
This scenario is common as there is a real physiological need for that child to eat those foods in order to satisfy (feed) the opportunistic gut microbes. Without refined foods and sugars those opportunistic microbes will not survive, and they are desperate to stay alive! The first few days, maybe the first few weeks, on the GAPS Protocol are going to be rough. Your child may refuse to eat the GAPS foods.
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re-inoculate the gut with probiotic (fermented) food Autism World Magazine - 56
The very behaviours that you wanted to address with the diet may well be exacerbated. As the opportunistic microbes start to die, due to their food supply of refined foods and sugars diminishing, a die-off effect can be seen. This die-off effect is from the release of toxins when the opportunistic microbes die. When the level of toxins are too much for the body to cope with, you often see an exacerbation of the original symptoms. This die-off effect needs to be managed. After the first few days, in some cases weeks, something changes. The child who was refusing the GAPS food will start to eat it; often eating bowl after bowl of the stock-based soup to the astonishment (and relief) of the parents. The journey to health has just begun and it is a long hard road. It is often two steps forward and one step back. It is also an incredibly rewarding road.
Sometimes parents of children on the Spectrum don’t realise how far they have come until they stop for a few minutes to reflect of what behaviours they no longer see. Those achievements they have seen in their child in a relatively short space of time, and a new level of calmness in their home. ‘Laughter is brightest where food is best.’ Irish Proverb The foods that your child eats need to be ‘the best’ for him or her. Loads of soups and stews, egg yolks and fresh vegetable juices should be consumed while you work on reinoculating their gut with probiotic (fermented) foods and heal and seal the lining of their gut. These foods are easy to digest, loaded with nutrients and soothing to their body and mind. As their health, mood and behaviours improve, laughter will also return. There will still be a pile of dishes to be done though.
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“using food as their medicine”
As a Certified GAPS Practitioner, Nutritionist and Naturopath, I love working with people, guiding them in returning to health, primarily by using food as their medicine. Where required, I use certain tests, including looking at genetic variations in order to optimise the journey to health and wellness. I run fermenting workshops and monthly support groups to empower people in regaining their health and the health of their family. We have a wonderful bunch of people that attend our GAPS Support Group meetings, ranging from people who have been on the GAPS Journey for two years or more to others that are only just contemplating GAPS.
They are all willing to share stories of their GAPS experiences in order to benefit others. At each meeting we have a PowerPoint presentation on an element of the GAPS Diet, there is a demonstration on how to make a fermented food, and taste testing of some GAPS food, followed by lots of time for discussion and questions. The GAPS Journey is made easier with the support of others. To find a GAPS practitioner in your area click HERE: ‘There are many that oﬀer advice, but there are few who oﬀer guidance.’ Author unknown.
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Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and Nedlands, Western Australia firstname.lastname@example.org
GAPS™ is the registered trademark of Dr Natasha Campbell-McBride.
Each month in Autism World Magazine Jacinta O’Connor takes you through some of the practical steps to help GAPS work for you and your family. And if you are using GAPS send us an email and let us know how you are going. email@example.com
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Building Friendships Preschool Children with Catherine Crestani and Diana Wolf
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In the previous issue, we began discussing common pi@alls for preschool children when making friends. The most common issues involve turn taking and sharing. Turn taking games – quick and short games are oDen the most successful for children with ASD. It helps to state the rules ﬁrst and then whose turn it is to start. For example you may say ‘Mum’s turn’, ’Billy’s turn’, ‘Dad’s turn’, whilst poin/ng to each person. This provides a clear and visual model for your child. You can also add in visuals if necessary such as an arrow poin/ng to each person. It’s ok to physically guide the child at ﬁrst as well.
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Easy and quick turn taking games include: Ball play (e.g. throwing/catching/rolling); Simple card games (e.g. memory, snap); Blowing bubbles; Car/train track racing games; Early board games (e.g. Trouble, Beetle); Pop-‐up Pirate; and Potato Head (e.g. my turn to put on a piece…). Sharing games – Sharing is an important skill for all children. Children with ASD struggle to share objects they are fond of (e.g. Thomas, Lightning). It is oDen be[er to start with an object your child likes but is not obsessed with. Sharing games can also be combined with the turn taking games.
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Some strategies to work on sharing include: Using /mers (e.g. egg /mers); Having only one thing to use for the ac/vity (e.g. if doing craD, having only one glue s/ck); Having two toys with one set of pieces to share (e.g. Potato Head); Sharing food (e.g. chips, cu]ng up a cake); and Verbally reminding the child to share whilst par/cipa/ng in sharing ac/vi/es. Social stories can also be a great way to teach your child about turn taking and/or sharing.
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Catherine Crestani and Diana Wolf are Principal Speech Pathologists at Nepean Speech and Language Services, in Penrith NSW, Australia. Diana has more than 21 years of experience and continues to thrive on learning new ways to provide intervention to children. Catherine’s passion is for early intervention, including supporting children with ASD. www.nsls.com.au
In the next issue of Au.sm World we’ll be discussing PARTIES!!! Don’t miss out CLICK HERE TO SUBSCRIBE FOR FREE
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DOWNLOAD OUR FREE BOOK OR ACCESS IT FOR FREE VIA YOUR APPLE OR ANDROID APP
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 READ OUR FREE BOOKLET ONLINE SIMPLY CLICK HERE Please feel free to share around.
THIS IS GREAT INFO THAT WE WISH TO SHARE WITH AS MANY AS POSSIBLE
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Larry Houser, Founder of “Fullerton Cares Autism Foundation” offers his tips on safety in and around the water.
As a dad of a six-year-old with autism I know first hand that water safety for children with autism isn’t just important in the summer. For my son Boyd, water was dangerous and scary at first, but then became almost too attractive, which was even more difficult than the anxiety and avoidance behaviors.
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Knowing of this elevated risk for people with autism, and with the help of these community resources, we can help our kids to become water safe together.
We had to keep him away from the water, and then slowly introduce him to ensure his own safety. Now he is like a fish and behaves much more safely, and we are so happy to have tackled this hurdle because drowning is the number one cause of accidental death year-round among kids on the spectrum, many times following episodes of wandering.
The challenge for our kids around water became well known after the story of Avonte Oquendo tragically ended in the water. One great resource that helped to inspire this article is the Autism Speaks offers resources to help promote water safety in communities through their new Water Safety Scholarship Fund
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I suggest these tips for water safety for children with autism: 1. Learn by repetition. Water safety, like any other sports, focuses on precise, repetitive motions to achieve a comfort level in the water. Break activities around the water into small repetitive steps for easy comprehension and generalization. 2. Recognize sensory input. Water provides tactile and proprioceptive sensory input to children with autism. They feel, touch, play and sometimes taste the water thus engaging and heightening their sensors and this can be part of the allure of the water. Help your child to recognize this and help he or she to find safe alternatives when seeking this type of input. 3. Boundaries. Be sure to place physical boundaries between your child and any water source. 4. Preempt wandering. Put alarms on your house and notify the school that this may be a risk for your child. The National Autism Associationâ€™s â€œBig Red Safety Boxâ€? helps equip parents to help keep their child safe from wandering. 5. Celebrate success! Water sports, like aquatic therapy, can help children with autism conquer challenges in other areas of their life. Encourage them in and out of the water and celebrate any small successes towards water safety.
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Larry and Boyd
ABOUT FULLERTON CARES: Awareness, acceptance and action are the pillars of Fullerton Cares, which spreads autism awareness throughout North Orange County and was founded by Lawrence Houser, after being inspired by his son, Boyd, with autism. Raising funds for autism charities and programs in Fullerton schools through organized events, Fullerton Cares was founded in 2010 and has raised over $53,000 for autism initiatives. http://fullertoncares.com/ You can connect with “Fullerton Cares” on Facebook: www.facebook.com/FullertonCaresAutismFoundation
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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 - 72
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Down the Rabbit Hole Â Alyssa Â Aleksanian
dealing with depression
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Depression stinks. There’s no two ways about it. That’s it pure and simple. Being in that dark, dank place is indescribable. It is a place beyond words. Living with Aspergers means you get used to the feeling of a ‘disconnect’ to the peopled world; there seems to be a foot thick pane of glass between you and any other.
But you learn to work with it; use your passions to calm you as you live alongside it; interact with others when you can, and when you can’t, say ‘At least I tried’. But when depression comes, it’s a double whammy; it’s as though that disconnect to the world is highlighted, becomes hyper-real and glaringly confrontational. Hands bruise from beating on the glass.
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In the depressive state, the knowledge of your AS often becomes physically painful. They call depression ‘insidious’, because it doesn’t come with some grand announcement or an obvious whack in the back of the head. It’s more like a creeper. You only know its got you when you feel yourself sliding backwards, as it drags you down the rabbit hole. What are the triggers? Coming to understand that becomes your quest because to understand your triggers is the surest way to prevent you sliding in too deep. For me, as for many with Aspergers, a common trigger is an unhappy interaction with others- a runaway misunderstanding or someone going back on their word i.e. meeting that train comes in many guises. These black, frozen states can last for days. I can’t talk much, the words seem too heavy and everything becomes the same bland, flat tone. If the trigger involves someone else, the person may ask what’s wrong or apologise but it’s too late: by that point, it’s almost impossible for me to speak.
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The thoughts in my head either freeze into silence, or swirl so fast I can’t catch them. Either way, no speech comes. Over the years I have taught myself that there’s nothing to be done in the state of depression; I just have to sit and wait for the black heaviness to pass. The important thing is to force myself to remember, while I’m down there, that there have been other times like this and I’ve managed to pull myself out of the well eventually. I just keep telling myself: This too shall pass. Those four words repeated often, even if at first they sound false, do make a real difference. Another sure proof way I come to sense hope again is to get outside into nature. Sensing the growth of green things; watching dragonflies flitting over water; the pure beauty of sunlight filtering through leaves; all this can be a balm to the spirit. Once I saw a remarkable eucalypt that had planted itself in a blocked down-pipe. It had a will to survive despite the obvious obstacles.
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â€œMy personal balm is the golden silence that comes in the twilightâ€?
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If a plant like that eucalypt, can take hold in such a precarious place and thrive in the most difficult of conditions then I, with far more resources at hand, can too. A personal daily ritual to decompress and recharge is important for someone with AS. Making time for pleasure every day can help to release built up anxiety enough to stave off latent depressive episodes. My personal balm is the golden silence that comes in the twilight. The birds are quietening in their roost. The insects are murmuring awake. The light is gentle and lingering. At these times my spirit, tight and constricted through dealing with the day, finally has time to expand into that quiet, peaceful space. I believe nature has a miraculous way of healing what is bruised and broken.
Silence and solitude will always help. When an Aspieâ€™s heart desires retreat, it is wholly what we need. Being in that silence can recalibrate us back to our centre. We find our own rhythm again. Whether it is behind a closed door, working at our special interest or tuning into nature, solitude gives us space and time to recharge and listen within.
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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 arDcles wriEen f r o m t h e ' i n s i d e r s perspecDve' 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 observaDon 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 informaDon to draw and learn from!” She holds a Masters degree in Teaching, as well as a BA in ConservaDon of Cultural Materials and a BA in Visual Arts (“yes -‐ like most with AS” she says; “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 Autism World Magazine - 80
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ODYSSEY WITH AUTISM MARIA ILIOU
Odyssey with my autism group, Unique issues surfacing Accepting disappointing news Or routine changes with difficulty Conversation skills on social topics Appropriate or inappropriate Mixture of words…powerful or scathing Knowledgeable versus uncomfortable Zoning in or out of their world Focusing on nature, relaxes mind Scenic route with vibrant colors Of fall leaves Varying of emotions, with different scenery Around water…tranquility Amazing landscapes Perfect picture…painting Hours upon hours of driving Arrival at our designations New London, Cape Cod Patterns of white streaks blending In a stunning blue sky…puffy clouds Waking up in the morning, rejuvenated Feeling the serenity of new experiences Discoveries, sight seeing And the adventure of learning Autism World Magazine - 82
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