Autism World Magazine Issue 20 by Autism World Magazine

Issue 20 / September 2014

essential reading for those who care

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Robotic education Chantal Sicile-Kiraâ&#x20AC;&#x2122;s Autism Life Skills Flower power Can we talk? Autism World Magazine - 1

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CONTENTS 10

ASK NAO Alia Pyros The robotic key to unlocking potential

AUTISM LIFE SKILLS With Chantal Sicile-‐Kira.

FAMILY ADVENTURES Maisie Soetantyo The world as our true classroom.

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Publisher:

ISSUE 20 / September 2014

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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

Editor:

Iain Croft Website:

autismworld magazine.com Facebook:

facebook.com/ worldautism 07 HOW ABOUT THEM APPLES The Calming Surf

64 THE GAPS DIET AND KAFIR Jacinta O’Connor

20 PUBERTY BLUES -‐ OUR WORLD Deb Flintoff

74 BUILDING FRIENDSHIPS Catherine Crestani and Diana Wolf

52 FLOWER POWER Kelly Burch

80 CHANGING SCHOOLS Ymkje Wideman-‐van der Laan

60 UNSUNG HERO: GINA MUZZIPAPA by Jerry Stockman

94 CAN WE TALK? Valerie Foley

Front Cover Nao with children at Moody Primary School 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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Editorâ&#x20AC;&#x2122;s Note Welcome to Digital Download version Autism World Magazine. This month we bring you tales of the power of robots in education with Alia Pyros . Award winning author, speaker and leader in the ASD field, Chantal SicileKira gives us more Autism Life Skills. We go in search of the power of flowers and continue with our popular focus on RDI as Maisie Soetantyo discusses traveling as a family. No matter where you are reading us across the world, schooling you tell us is a huge issue. Ymkje Wideman-van der Laan guides through the upheaval of changing classes. And to make you think... Valerie Foley asks if we can talk about vaccinations following on from recent admissions from the US Centre for Disease Control. 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. Enjoy...

iain iain croft editor and publisher iain@magswest.com www.facebook.com/worldautism

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HOW

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ASK NAO by Alia Pyros the future for special education with the help of the latest robotic technology

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Itâ&#x20AC;&#x2122;s no secret that opening a childâ&#x20AC;&#x2122;s world through education can seem like a daunting task. However, this is a task, to which all of the best teachers have dedicated their lives. They strive each day to figure out which form the key to unlocking the potential of their students will come in.

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For a little girl named Jazzy at the Moody Primary School in Haverhill Massachusetts, and many others around the world, this key took the shape of a small, humanoid robot named NAO. NAO, created by French company Aldebaran Robotics, has, within the last year, been transformed from the open platform used globally to teach STEM (Science, Technology, Engineering, and Mathematics) education to an easy-to-use teaching tool for the special education classroom.

With an abundance of customisable applications, based on a variety of autism methods including: ABA, PECS, TEACCH, DENVER, and SCERTS, an online interface for tracking progress and organising information and, of course, the robot, the ASK NAO initiative works to not only be an assistant to teachers but also a friend to children. Autism World Magazine - 12

Moody Primary students with NAO

On an average day you can find Jazzy sitting playing with her braids or meandering around the classroom rather than paying attention to the lesson. Jazzy, a sweet little girl with dark eyes, finds it difficult to focus her attention. She’s been diagnosed with hypoplasia of the corpus callosum, polymicrogyria, seizure disorder, myopia and global developmental delays. She has very little interest in her peers or in lessons, and often turns to her own activities while in class.

After Moody Primary started working with their two NAO robots through the ASK NAO solution, Jazzy’s in-class attitude completely changed. Julie, the Behaviour Specialist at Moody Primary, who often does one-on-one sessions with Jazzy said: “I wish I had taken video from the first day I started using the robot with her...she has come a long way. ‘She has really responded and enjoys her time with the robot."

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http://youtu.be/_AxErdP0YI8 http://youtu.be/_AxErdP0YI8 http://youtu.be/_AxErdP0YI8 http://youtu.be/_AxErdP0YI8 http://youtu.be/_AxErdP0YI8 http://youtu.be/_AxErdP0YI8 Click picture above to watch NAO in action Autism World Magazine - 14

children of all ages

For children of all ages NAO harnesses a sort of wonder, which captivates them, draws them in and makes them want to interact and play with him. Though she is a nonverbal student there are a number of ways Jazzy interacts with NAO.

By showing NAO pictograms she can learn about identification, object classification and categorisation. NAO also has a number of touch sensors which make games like â&#x20AC;&#x2DC;Touch My Headâ&#x20AC;&#x2122; a fun, interactive experience. For this game NAO prompts Jazzy to touch some of his body parts including head, hands and feet. Autism World Magazine - 15

Stress-free, in-class integration

Touching the correct body part makes NAO do a little dance, making Jazzy giggle. The simple words NAO uses are also making an impact on Jazzy; her teachers noted that after a few sessions playing with the robot she spontaneously pointed to NAO’s head and said “head”, a verbal breakthrough for her. For those hesitant about looking to robotics as a new tool for the classroom, don’t be.

The ASK NAO solution was created to fit the needs of teachers, not only in regard to simplifying note-taking and status tracking but also through an online interface making customisation of lessons and activities with NAO as simple as drag and drop. Stress-free, in-class integration and progress sharing features make this solution easy enough to use by even the most non techsavvy teacher. Autism World Magazine - 16

Also, unlike most special education tools, the ASK NAO solution is ever-evolving. Thanks to feedback from teachers using the solution and an active online community, ASK NAO continues to develop and encompass more and more learning goals to offer teachers and students a wider range of fun applications.

Are you looking to make a difference in your classroom? Learn more about the ASK NAO initiative at: www.asknao.com. Alia Pyros

Because of this, Jazzyâ&#x20AC;&#x2122;s teachers can customise the solution into what aligns with her IEP the best, customising her learning experience and targeting her needs. The ASK NAO initiative is looking to drive special education into the future with the help of the latest robotic technology. Alia and NAO

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NAO IN THE CLASSROOM : Humanity and technology pairing together to break down the barriers of exclusion HUMANOID ROBOTS: Use the attraction of technology for kids to bridge the gap with the human world. SIMPLER THAN HUMANS: Displays less information to process and so decreases overstimulation risks. PREDICTABLE: Minimises unexpected interactions that might lead to increased anxiety. TIRELESS: Can persistently try, teach, and prompt students. NON JUDGMENTAL: Cannot hurt children with negative feedback so they feel more confident in trying. MULTI-INTERACTIVE: Every child can participate using verbal, tactile or visual interactions. EVOLUTIONARY: Can customise edutaining (educational and entertaining) applications based on each childâ&#x20AC;&#x2122;s individual profile. ON THE WEB: Can use knowledge from the Internet.

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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 WORLD Deb Flintoff

Have you ever placed something down on a bench, only to turn around and find it nowhere in sight? Have you ever positioned a cushion on a couch, or the couch itself, only to find it relocated to another part of the room? Have you ever placed your keys, in precisely the same place as you always do, only to your shock horror find them missing once again and your husband thinks you are losing your mind??? Welcome to our world... "...Where everything has an order And every order has a place..."

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From the time my son Josh was a toddler, it was obvious he had a penchant for order. My friends would marvel at his organisational skills while watching him put his toys away ever so nicely, or should I say precisely. At the same time my friends were commenting on how they wished their babes were more neat and tidy just like Josh. Hindsight is a funny thing. Looking back there were many

indicators; a multitude of light bulb moments such as: Josh's tidy tendencies, love of inanimate objects, wheel spinning and various other behaviours that should have sparked our attention and ultimately lead us to Josh's Autism diagnosis a little, or maybe even a lot, sooner. But, there were also the constant reasons or excuses so readily offered by those who felt the need to alert us to the fact that children develop at different rates and that we had little or no cause for concern. Autism World Magazine - 22

Reasons such as: "Josh likes numbers because daddy is an accountant", "he will be a mechanic like his uncle because his likes spinning wheels", the infamous generalisation,

"Oh, it's just a phase, he'll grow out if it!". Fast forward to the present. Josh is 17 and a happy, healthy, food loving, funny, if not at times, hormonal teenager. Soon to be adult... arghhhhhhhh!

"all children are fussy eaters", and the one placating comment which always brought a curious grin (if not part grimace) to our face,

His innate need for tidy toys has evolved along with various other forms of behaviour, into an array of highly ordered and structured OCD rituals. Autism World Magazine - 23

We have learnt to "pick our battles" From his preoccupation with symmetry, positioning and placement to his highly repetitive nature and mannerisms, our world at times is, as you can imagine, quite interesting to say the least. Over the years Josh's behaviours have waxed and waned, ebbed and flowed.

We have learnt to "pick our battles" as the old saying goes and work with these everyday hurdles as patiently, positively and effectively as we know how. Together, with the help and guidance of our incredible support team, we continue to strive for and achieve a life of meaning, balance and opportunity for Josh as he inches towards his adult years.

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It is Josh's unique view of the world, sweet nature, innocence, kind heart, sense of humour and special talents, combined with his ritualistic, repetitive and, at times, challenging behaviours, which have seen him evolve into the wonderful and very individual teenager he is today. Or as he would say, in his own "Josh" way, "the nice teenager he is forever and ever and ever".

Deb

Do you have a story, about the teenage years, to share to help the next generation of ASD families. Please contact us at Autism World Magazine: Email: story@magswest.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com

Deb Autism World Magazine - 25

IS RDI FOR YOU?

with Maisie Soetantyo

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Family Adventures Maisie Soetantyo “The world is the true classroom. The most rewarding and important type of learning is through experience, seeing something with our own eyes.” – Jack Hanna

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During our recent travels from Singapore to Jakarta, my family and I were running through the length of Terminal One at the Changi Airport, dragging our suitcases with our kids whining behind us, and worst of all, having to do the walk of shame as we stepped onto the plane as the last ones on boardâ&#x20AC;Ś (We had not changed our clocks). It was a miracle that we made it back to Jakarta!

Some families are amazing travelers, and I always wonder about their secrets; how do they occupy their children on the plane when everyone else is asleep, what do they know what to pack without bringing the whole house with them, what kind of accommodations do they choose and how do they keep everyone happy with holiday activities.

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In the RDI (Relationship Development Intervention) program, we believe that traveling is an invaluable opportunity to build the guide-apprentice relationship through real world opportunities. Often times, parents avoid long distance traveling because it may cause too much anxiety on themselves and their child with Autism. Issues such as inflexibility, sensory overload, dietary restrictions, transition problems, safety or tantrums are tough to handle when you are out of your own comfort zone. In my search for useful ideas on traveling with a special needs child, I found two excellent books “Autism & Travel” and “A Travel Resource for Parents of Children with Special Needs” written by Jesemine Jones and Ida Keiper. http://www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1? ie=UTF8&qid=1409630182&sr=8-1&keywords=autism+and+travel http:// www.amazon.com/Autism-Travel-STRATEGIES-AWESOMEEXPERIENCE/dp/0988838656/ref=sr_1_1?

The writers were founders of the “Starry Night Travel”, a travel agency based in New York specializing in helping parents with special needs children plan a getaway. These books contain practical tips, check lists and important questions for parents to consider before and during their trips. For instance, topics such as safety, getting through airport security, vacation countdown calendars, adapting to new environments and many more are thoroughly discussed.

http://www.amazon.com/ STARBRITE-Traveler-ResourceParents-Children-ebook/dp/ B00F0X2DVQ/ref=sr_1_1? ie=UTF8&qid=1409630459&sr=8-1& keywords=A+Travel+Resource+for +Parents+of+Children+with+Special +Needshttp://www.amazon.com/ STARBRITE-Traveler-ResourceParents-Children-ebook/dp/ B00F0X2DVQ/ref=sr_1_1? ie=UTF8&qid=1409630459&sr=8-1& keywords=A+Travel+Resource+for +Parents+of+Children+with+Special +Needshttp://www.amazon.com/ STARBRITE-Traveler-ResourceParents-Children-ebook/dp/ B00F0X2DVQ/ref=sr_1_1? ie=UTF8&qid=1409630459&sr=8-1& keywords=A+Travel+Resource+for

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“Try having a vacation family

Pow-Wow”

Thinking Ahead Does traveling get any easier? The answer is “YES”. Even if a trip turns out to be a stressful fiasco for whatever reason, it is still an opportunity for families to plan better for future adventures. The key to having a productive getaway is providing a meaningful experience for the child before, during and after a trip. When children are given a chance to be actively involved in planning a trip, they are more likely to take ownership of the outcome they would want to gain from the new experience. So where do we start? Jesemine Jones and Ida Keiper started off their book with a wonderful bit of advice; ‘imagine and dream your vacation’. Start having a discussion with your family months or even a year ahead on what your ideal vacation might look like.

Try having a vacation family 'PowWow’ once a week, so it won’t be a hurried, last minute activity. For individuals with ASD, getting involved in a project where they can take part in revisions, fill in the blanks, think about options, develop a check list and consider other’s input and preferences is an excellent practice. Is it a relaxing beach, challenging mountain hike or exciting city scenery? If your ASD child has a difficult time participating in a lengthy discussion, keep it simple. Make a visual scrap book for everyone, with drawings or photos. Research possible new places, activities to explore, tag good travel tips and take snap shots of interesting land marks as a family activity.

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An organizational App for iPad, iPhone or android phones such as Evernote can provide simple ways to create written, audio or visual folders and journals, as well as tools to help you develop check lists. Perhaps it is hard to agree on an ideal place?

No problem, everyone could have a different scenario and compromise can be made as planning advances. Next is to fill in the details; will the vacation involves animal or train themes, shopping, hiking, water sports or eating at well-known restaurants? This bottom up approach will help the whole family to choose an ideal vacation spot with a little bit of everyoneâ&#x20AC;&#x2122;s interests.

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Getting Ready

The Goal beneath the Goal

Once the family has chosen a vacation destination, they can now identify potential travel concerns. In the “Autism & Travel” book, the writers recommended creating a check list of concerns grouped into major aspects of the trip.

In RDI we coach parents to include their ASD child in meaningful opportunities where both parent and child collaborate not only in ‘doing’ things together, but also to focus on the process of decision making.

For example, at the airport and on the plane ride, there may be sensory issues related to being in a crowded place, waiting in line for security check, keeping a seat belt on or sitting calmly during the flight, etc. Problems related to vacation accommodations could be riding in an elevator, sleeping on a different bed or unfamiliar routines. Other major concerns for parents are frequently related to safety issues, such as staying close to a parent and not wandering off without permission.

One objective that many young children (as well as individuals diagnosed with ASD) can learn to improve is in the area of ‘executive functioning’, which is defined as the ability to link past experiences with 'in-the-moment' decision making. Activities such as planning, organizing, anticipating what comes next or time management are just a few examples of executive functioning exercises. Thus, planning for a vacation can make a great family project!

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Emma in the dining car

There are many daily activities adults do that can serve as excellent vehicles for our children to prepare for a vacation. For instance, making a check list with our children for things to do, to pack or to buy, fits perfectly with advance trip preparations.

Practicing walking together after dinner while focusing on relaxing and sharing the experience, could increase a childâ&#x20AC;&#x2122;s ability to monitor his/her parent and their surroundings. During these walks parents can spotlight staying together for safety purposes. Below are some â&#x20AC;&#x2DC;keep in mindâ&#x20AC;&#x2122; tips for parents as they use daily activities to plan and prepare for a vacation:

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Assign two active roles in any activity, so that a parent and child could work on collaboration and exchange of ideas throughout the activity. For example, when choosing an ideal vacation place online, the parent can take on the role of ‘note taker’ while the child can search and highlight interesting things about each place. A true partnership reflects the process of a parent guiding one step at a time, instead of a parent instructing his/her child to complete tasks. Make time to schedule and slow down communication pace to increase the quality of discussion for vacation planning. Take the time to look at previous decisions and make revisions as a family. Spotlight “Same but different”, so that our apprentice can relate ‘now’ to the ‘past’ in order to anticipate the ‘future’. In RDI we often use a preview before we begin an activity. It might sound like this: “Remember when I went grocery shopping and you helped me check on the items we needed to get? Now we are going to make a list of things we need to pack for our camping trip”.

Focus on the process and not the end results, which means that the most important moments in any activity should be the discussion points where both a guide and his/her apprentice notice a potential problem, and decide what would be the best way to resolve it. Use clear feedback to spotlight the apprentice’s competence in processing information, thinking and decision making. This means that a guide should avoid using a generic “good job” and instead utilize some more specific phrases such as “I like this idea much better than the last one” or “Thank you for helping your brother to find things to do”. Keep it simple and don’t rush! There is always a way to break things down, to make the process clearer, or to choose better tools. But this also means that a guide needs to take on the responsibility to set the pace, plan ahead and develop good habits first.

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Travel-Related Activities In this last section, I put together a list of activities that can be rehearsed ahead of time to prepare our young travelers: Walking: We all have to walk everywhere, even when we do chores around the house! Get your apprentice to help you carry the grocery bags, laundry baskets, and before you know it, they are ready to help you to carry the suitcases! Another idea is to incorporate different themes into your leisure walking, such as ‘bird watch’, ‘walk in the dark’, ‘what are they cooking’, ‘who lives there’, ‘I Spy’, or ‘rock collecting’ walks? These themes give some novel and interesting shared perspectives to communicate between a parent and his/her child. Trying New Hobbies: Why not take on a new hobby, perhaps learn photography, a new language, cooking or water sports? Trying new activities provide opportunities for a parent and his/her child to navigate uncertainties together.

Collecting Mementos: Collectively discuss how your family can capture mementos of your upcoming trip, aside from just taking pictures and videos. Perhaps collecting coasters, postcards, coins, match boxes, bottle caps, or ticket stubs? Map Reading: Here is an important activity that could increase your child’s independence and awareness of safety. Start with paying attention together to directions to your frequently visited stores, parking lots or streets. Extension activities could be creating your own map or finding an online map of your destination. Furthermore, map reading can easily tie in with finding important places such as a ‘restroom’ or an ‘exit’. Packing and Unpacking: Lastly, here is something we all pretty much do on a daily basis. Take the time to practice packing and unpacking for familiar routines, such as a lunch box, backpack, swim bag, overnight bag and eventually, suitcases!

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While most of us are not functioning at our best while rushing to get to the airport, trying to make it to the gate, or getting the kids somewhat clean before they meet relatives, the more we rehearse as a family the better the chances are that a long-awaited vacation will turn into a cherished family memory.

For additional questions or comments about this article, contact Maisie at: catchmaisie@comcast.net

Maisie Soetantyo

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

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“I realized it was time to grow up” Some days the world is to big and too complicated and it's easy to get lost. I think some,mes we all get a bit lost....even me and even Dadda. Some,mes the world is confusing and scary and some,mes even the strongest people or monsters get scared.

But right now I want to tell you that you are strong, and inspiring and I promise you that one day soon...everything will feel beCer, the world will be beCer for you. I want to tell you that from the day you were born you have made me a beCer person, you have made me look for light even in the darkest places and I have found it in you, in your smile, in your laugh, when your eyes sparkle when you talk to me about things that you love.

Even.... Godzilla.

And right now, everything the whole world might seem like a big scary place, and right now you might feel alone and lost.

I know someday soon we will see you smile again, hear you laugh, look into your eyes to share some special moment that you might want to share with us. When you ache I do, and right now all I want is for everything to be beCer, but you have taught me pa,ence and I know

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Autism Life Skills Chantal Sicile-Kira

10 Essential Abilities for Children with Autism

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Now that I know how to communicate better, not only can I type what I want, but I have learned to have more patience, and that can be read in my behaviours. That moment in which I realized it was time to grow up involved learning how to type to communicate. My message skills went from pointing at objects and trying to verbalize to successfully typing letter by letter anything I had to say with whomever I wanted to. Having autism has hindered my ability to talk, but not my ability to think. By Jeremy Sicile-Kira, A Full Life with Autism

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Communication Last month, I discussed “making sense of the world” -sensory processing – which was the first important area of need cited by adults on the autism spectrum when interviewed for my book Autism Life Skills. The ability to communicate was the second most important area of need. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective.

Sue Rubin, writer and star of the documentary “Autism is a World” (see video below) is a nonverbal autistic college graduate and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased. Jeremy has described some of those positive attributes to learning to type in A Full Life with Autism.

http://youtu.be/U1wsiVYCqn0 http://youtu.be/U1wsiVYCqn0 http://youtu.be/U1wsiVYCqn0 http://youtu.be/U1wsiVYCqn0 http://youtu.be/U1wsiVYCqn0 http://youtu.be/U1wsiVYCqn0 http://youtu.be/U1wsiVYCqn0 Autism World Magazine - 43

Those on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped

Michael (pictured above) become the accomplished speaker he is today.

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Safety Many on the spectrum had strong feelings about the issue of safety, and cited Safety as the third most important life skill in which they needed help as children. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years. Practically all recounted instances of being bullied. Some communicated that they had been sexually or physically abused, though some did not even realize it was abuse at the time. They all shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied.

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For example, Michael John Carley, Founder of GRASP and author of Aspergerâ&#x20AC;&#x2122;s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom. A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and providing him/her

with a safe place and safe person to go to at school would have helped as well. Teaching them the â&#x20AC;&#x153;hidden curriculum,â&#x20AC;? so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey. Teaching all about boundaries and inappropriate touching and giving those unable to speak a way to communicate to a trusted adult once it has occurred is empowering.

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Self-Esteem Confidence in oneâ&#x20AC;&#x2122;s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good selfesteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them.

Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence. Autism World Magazine - 47

“Learning to communicate broadened his horizons” Pursuing Interests This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, he had no idea that he was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to Zosia. As students, some of these adults were discouraged from following their obsessive (positive translation: passionate) interest.

Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store. For people like Jeremy, it may not be apparent that there is a talent or interest other than stimming. Once he could communicate, Jeremy expressed interest in learning, going to college, and writing and presenting about autism to help others. Learning to communicate broadened his horizons!

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Next month, Iâ&#x20AC;&#x2122;ll be discussing Self-Regulation, Independence, Social Relationships Employment, Self-Advocacy, and finally â&#x20AC;&#x201C; Earning a Living- all necessary life skills to enjoy a full life with autism!

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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.

Click on the picture below to order any of Chantal’s books

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Become a Full or Professional Member of Autism West and, on top of our fantastic Centre, Support and Resources, get the Digital Edition of Autism World Magazine FREE each month. For iPad, iPhone, PCs, Desktop and all portable devices. You get so much more with Autism West. Autism West offers the following Membership Options:

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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

Au9sm West Support Inc | www.au9smwest.org.au 41 Broadway Nedlands WA 6009 | PO Box 666, Nedlands WA 6009 Tel: 08 6389 1833 | Fax: 08 6389 2600 | Mobile: 0414167345 Autism World Magazine - 51

flower power KELLY BURCH

“Flower Essences”. Those words sound subtle and soft and gentle. They don’t sound hard-hitting enough to have an impact on something as serious as autism, do they?

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Flower essences are liquid drops containing the energetic properties of flowers. Each flower has specific actions relating to emotions and energy. They are typically taken orally, and contain nothing but the energetic signature, preserved in a solution of brandy and water. Having been a flower essences practitioner for many years, I recall a moment where I’d suggested them to a woman as support for a difficult situation that her husband was in. The response was, “No offense, but your hippy flower water isn’t going to be enough for this situation”.

Despite their softness, flower essences are strong catalysts for change and work to support the energy system of the recipient. Even the most serious of ailments can have energetic issues at the core, so working on this level has the potential to make differences that other treatments are unable to mask, if they target only the outward symptoms and not the core itself. I wanted to confirm for myself the effectiveness of flower essences, as well as understand the role of energetic treatments for those who are diagnosed with autism. That inspired me to conduct an experimental project involving flower essences and children with autism.

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I called it the Essences For Autism Project. I had trained and worked with energy techniques for many years and I knew that energy system disruptions could manifest in symptoms relating to social interaction, sensitivity, sleep, and more. I had a theory that working to improve the flow of the energy system, reducing energy system stress, and raising vibration would have a positive effect in autism.

The results were very positive: All participants of the Essences For Autism Project showed improvement in at least one area of difficulty. 85.7% of participants showed overall improvement compared to their starting states. 95% of parents would either use flower essences again or recommend them to others as support in autism. Parents gave feedback on how their children were sleeping better, seeming happier, calmer, able to concentrate more easily.

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It was wonderful that working only with the energy system using natural ingredients, without a change in routine, made such a positive difference by way of symptoms of autism. One mother, Leila shared her experience. I worked distantly to create a blend of flower essences for her son Ben: “I have long been a fan of energetic medicine, having first experienced a profound shift with homeopathy some 20 years ago. I believe the flower essences to be even gentler and have dabbled with them a little (self prescribed). I was excited and immediately drawn to them when I came by Kelly Burch’s website via a Facebook group. “My son Ben is 10 years old and was diagnosed with autism at 3 and a half.

“We've done a lot of work to date; all the usual therapies and biomedical treatment for the last few years. “The most successful so far, without a doubt has been a diet of unprocessed foods and very low carbs. Ben is now calm, where once he was hyperactive and unable to focus.

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“I contacted Kelly via email and described Ben’s temperament, as well as the obsessive issue in as much detail as I could. Kelly explained that she would intuitively read Ben’s energy from a distance (we are in Sydney and Kelly is in the state of Victoria, Australia). I also sent a photo. “Although he is in a pretty good place, there was still an issue with obsessive behaviours; no matter what we did... it calms but never really stops, only shifting from one repetitive habit to another. “I felt that an energetic approach may be just what Ben needed as an adjunct to current treatments.

“A lovely little bottle called ‘My Pliable World’ arrived in the mail the following week, with a description of the customised blend of essences. “The first thing that I noticed immediately was that Ben was more talkative. He was commenting on everything and seemed to be wanting to connect with me.

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“It was a little bothersome at first because he was interrupting my every train of thought.

“To the teacher’s credit, she acknowledged this as a good thing and tried to support rather than intervene.

“But I didn’t let myself feel bothered; my child was trying to connect.

“It was only later on when discussing Ben’s progress with Kelly, that I realised that the obsessive behaviours were completely gone.

“There was also a little excess energy about him, but I figured that would be the drops for sure. “Within another couple of days, Ben’s teacher pulled me aside at school pick up and said she just wanted to mention that Ben seemed to be a little more dysregulated but not in a bad way, and not to worry. “He seemed to be trying to connect with the other children more, albeit by pulling one’s hat and being a bit annoying.

“I love that the essences are so gentle, and that they can work alongside what we’re doing. “I recently shared my experiences of flower essences with autism at The Thinking Moms’ Revolution e-conference ‘Energetic Healing for Children with Autism and their Families’, with other fellow energy professionals. “I am thrilled that this information about support that is non-invasive, affordable and beneficial is getting out to the world!”

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Kelly Burch is a Flower Essences Practitioner, as well as an Emotional Freedom Technique Practitioner and Trainer. She is passionate about transformation and encouraging the expression of a personâ&#x20AC;&#x2122;s true nature using energy techniques. kellyburch.com.au/ www.facebook.com/TransformationsWithKellyB/

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Unsung Hero - Gina Muzzipapa by Jerry Stockman Gina: learning more with her iPad that she just received, playing guitar, piano, loving life to the fullest. I wish everyone could copy her sense of happiness to spread to the world! CLICK HERE TO NOMINATE YOUR UNSUNG HERO 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: Kaﬁr Jacinta O’Connor Nutritionist Naturopath Certified GAPS Practitioner MINDD Practitioner Additive Alert Presenter Kardinya, Western Australia

Fermented foods are essential to introduce to the GAPS diet from the very beginning and kefir can be managed after whey and yoghurt have been successfully introduced. Supplementing with probiotics in general will allow beneficial flora to do its job in the upper parts of the digestive system. Fermented dairy will carry probiotic microbes all the way down to the end of the digestive system all the way down to the lower bowel.

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What is kefir? Kefir is a health promoting fermented dairy drink, similar to yoghurt but slightly tangier and much stronger. While yoghurt usually contains only two or three strains of bacteria, kefir contains a much wider variety of friendly micro organisms, including beneficial yeasts, some of which can break down lactose [milk sugar]. Kefir is a probiotic beverage made with Kefir Grains either Real Kefir Grains or a powdered Kefir Starter Culture. There are two types of grains, Milk Kefir Grains and Water Kefir Grains. Milk (dairy) Kefir culture can be used with cow milk, goat milk or coconut milk. Water Kefir Grains can be used with sugar water, juice or coconut water. Kefir Grains consist of bacteria and yeast existing in a symbiotic relationship. The term “Grains” describes the look of the culture only. The culture does not contain actual “grains” such as wheat, rye, etc. courtesy: gapsaustralia.com.au

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Please note that 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. 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 dieoff response. It is your bodyâ&#x20AC;&#x2122;s way of saying it is not coping with the toxins released from the death of pathogenic microbes.

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Healing needs to be aligned to what your body can cope with.

Start with one mouthful only.

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.

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 Kefir recipe Kefir grain Milk In a glass jar, add kefir grain to milk in a ratio of 1 part to 10 parts. For example, add a tablespoon of kefir grain (around 25ml) to 1 cup of milk (250ml). Cover and leave on the kitchen bench at 20C for 24 hours. If you are unable to maintain a constant temperature in the winter months, you will need to ferment your milk for longer or lessen the ratio. Once the ferment is completed, strain the kefir milk into a glass storage container, and refrigerate. The grains can be used straight away for other ferments, or placed in the fridge, covered with nonfermented milk, for a period of up to one week.

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To make yogurt or kefir cheese Drip your yogurt or kefir through a cheese cloth to separate it into cottage cheese and whey. To do that, place a sieve on a glass jug. Place two layers of cheesecloth to line the sieve. Pour the yogurt or kefir into it. Tie the four corners of the cloth together and hang it above the sieve to drip for 8 â&#x20AC;&#x201C; 12 hours. (Ensure this is kept in the fridge while â&#x20AC;&#x2DC;drippingâ&#x20AC;&#x2122;). After dripping is complete, pour the whey (the yellowish liquid that drips out) from the bowl into a clean glass jar with a tight lid. Keep it in the refrigerator to use as a starter for fermenting different foods. The cottage cheese in the cloth is delicious with some honey, fruit, soup or as a savoury snack. You can turn it into a dip by adding garlic and fermented roasted red peppers, or homemade Dijon mustard.

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Storing your kefir grains when not in use When you are not using your kefir grains to ferment, you can store them in a glass jar in your fridge, covered with a non-fermented milk product for up to a week. When you are ready to re-use the grains, rinse very lightly with filtered water. Make your kefir as you normally would. If you will not be using your kefir grains for a while, you can gently rinse them and store them in a glass jar in the freezer. They can be stored for up to three months. When you are ready to re-use your frozen grains, defrost the kefir grain and add them to a small amount of milk. Leave them to ferment on the bench for 12 â&#x20AC;&#x201C; 24 hours. Remove grains and dispose of the milk. Repeat this process. This is done to reawaken the grain.

Your grain is now ready to be used for a ferment.

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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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Building Friendships with Catherine Crestani and Diana Wolf

Children with ASD o0en have diﬃcul6es with making friendships with peers their own age. This may be from the child being unsure of how to make friends, or how to keep being a friend. There is a common mispercep6on that children with ASD do not want friends as they prefer their own company or the company of adults. This is not always the case.

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The process of being able to make and keep friends is very complex. Many children who cannot make friends may lose confidence in their abili6es to do so as they con6nually fail in social situa6ons and find the process of making friends overwhelming. This may lead to the child preferring to play alone rather than finding themselves in social situa6ons that may cause stress and more failures. Whilst the process of making and keeping friends can be complex, these skills can be broken down into individual components and taught to the child. This includes all situa6ons in life, from playing in the playground to interviewing for a job, with people they do and do not know.

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Some strategies and/or games to try with your children to assist in improving their vocabulary. In order for your child to be able to make friends, they need to have some basic skills to begin with. These skills include: Communica6on – a child needs to be able to sign/ point/speak their basic wants and needs in order to be understood by the other child as well as some basic understanding of what the other child is saying to them. Turn taking – a child needs to be able to take turns (at least once) by sharing. Mutual interest – a child needs to be able to share a common interest with another child. Personal space – a child needs to be able to respect other children’s personal space, as well as tolerate having other children near them.

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Remember make it posi6ve and fun! 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

Over the next few issues we will discuss pi3alls and strategies in the process of making friends for diﬀerent age groups. Don’t miss out CLICK HERE TO SUBSCRIBE FOR FREE

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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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CHANGING SCHOOLS Ymkje Wideman-van der Laan During the years of caring for my grandson, I not only saw him through his first school experiences, starting with preschool at age three, but we also moved almost every year, which meant new schools as he started Kindergarten and 1st grade. Each time we moved and/or started a new school year I learned something new about how to help prepare him for these changes.

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Contact the school/staff ahead of time Something I found helpful was to contact the school to request a visit before the start of school. I explained that because my grandson has autism, I would like to meet regarding his placement, and arrange to see his new classroom and meet with his new teacher, if possible. Most of the schools I contacted reacted positively to my request, and because of it, the transition back to school, or to a new school, went much more smoothly. It also helped lay the groundwork for good communication with the school staff.

From the start, the staff knew I was going to be an involved grandparent, with a desire for open, two-way discussion about my grandsonâ&#x20AC;&#x2122;s needs and progress. Once all the paperwork was processed and his placement worked out, I was able to walk through the school with my grandson before school started, to give him an idea of the layout and where his classroom and desk would be. I also asked permission to take pictures, so I would be able to write a picture story for him about his new school and classroom. Autism World Magazine - 81

A sample story Following is a story I wrote and printed out for my grandson prior to starting Kindergarten at a new school in a new location.

I reviewed this story often with him during the days leading up to the first day of school. He was so excited once the big day arrived.

It included the pictures I took while we visited his new school and classroom, and pictures of his new teacher and her aide as well.

I left the names and places blank, in case you would like to copy and paste this story into a Word Document, and adapt it by adding your own pictures and information particular to your child.

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MY NEW SCHOOL This is my new school (picture). The name of my new school is… My new school’s mascot is a… (picture). MY NEW CLASSROOM This is my new classroom (picture). I will have new friends in my classroom. I will be a good friend. Good friends are nice to each other. I will have lots of fun with my new friends. I like my new classroom! MY NEW TEACHERS My new teacher is Ms. … (picture). Her assistant is Ms. … (picture). An assistant is a helper. I will learn many new things from my teachers. I will be a good student and listen carefully when Ms. … and Ms. … tell me things. At school, I will be a 5 Star Listener. My eyes are watching, my ears are listening, my lips are closed, my hands are still, and my feet are quiet when it is time to listen. Listening to my teacher and following the rules is good. I will be a good student.

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â&#x20AC;&#x153;the perfect setting for a potential meltdownâ&#x20AC;?

Orientation This may vary in different schools and locations, but several schools my grandson attended had an orientation day for parents and students before the start of school. Some schools have the parents and students come in to meet with their new teachers and her aides personally, staggering the visits at 10minute intervals, while other schools may invite groups of parents and students to meet at the same time.

In one school, the orientation day promised to be quite a chaotic event, and the confusion and presence of so many people in one room seemed to be the perfect setting for a potential meltdown. I called ahead of time and asked if there would be a way for my grandson and me to meet privately ahead of the group orientation. After some persistence on my part, the request was kindly granted.

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Meeting the teacher(s) and aide(s) In most cases, my grandson was able to meet his new teachers and aides ahead of time. In one situation, however, his new teacher was not available at the time we were to visit the school. I left her a note and asked her to call me, as I would love my grandson to meet her before the start of school. When she called, I invited her for a cup of coffee at our home, if she had time, which she happily agreed to after checking with the principal about it. We had a great visit together, and she and my grandson had an instant connection.

During her visit, I showed her the visual supports my grandson had used in his previous school setting, which I had copied for her, and I was able to answer other questions she had as well. She had a chance to observe my grandson during her visit, which gave her an idea of his communication abilities at that time. Just in case I had not been able to meet with her, I had also prepared an “All about Logan” page, and a “Positive Student Profile,” both of which included at least one recent photo of my grandson.

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I had attended a workshop organized by a local chapter of the Autism Society of North Carolina, and Amy Perry, one of their Parent Advocates, presented this idea. She herself a parent of a child with autism, shared how this helped new teachers and aides to get to know her daughter, and have important information about her on file to refer to if needed. I filled out these two forms for my grandsonâ&#x20AC;&#x2122;s teachers each time he started a new school

year, whether we were able to meet the teachers before the start of school or not. It never failed to impress and generate gratitude. Things the teacher and aide otherwise would have to find out by trial and error were already covered, and helped start off their interaction with their new student on a positive note. (If you would like copies of these blank forms, please feel free to contact me, I will be happy to send them to you.)

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Preparing at home During the month leading up to the first day of school, we spent time talking about school daily. We reviewed the “My New School” story, and often talked about school rules. Most children with autism are visual learners, and my grandson is no exception, so using clip art, my printer, and laminator, I created several key ring cards to prepare my grandson for what would be expected of him at school. “Repetition is the law of memory” for any of us; and especially for children with autism, the more they see and hear something, the better they will remember. By the time school started, the school rules were memorized.

Those early key ring cards eventually developed into the “School Rules Are…?” book in my Autism Is…? series of children’s books. In the back of the book, you will find several easy-to-make visual supports, including the School Rules Are…? key ring cards. If you have not seen it yet, you can find it in both print and Kindle version here:

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â&#x20AC;&#x153;Most children with autism

are visual learnersâ&#x20AC;? Autism World Magazine - 89

“It worked like a charm most of the time!” Schedules and changes When my grandson first started preschool, it meant quite a change in his daily schedule. In order to prepare him for what his day was going to be like, including transitions from one activity to another, I asked his teacher if she could give me his daily and weekly schedule ahead of time, and she provided me with all the information needed. I then printed out lined slips of paper, called “Logan’s Day,” and each morning before leaving for school, we included in the routine of getting dressed, eating breakfast, and brushing teeth, the writing out of his daily schedule.

Logan took his written daily schedule to school with him, and the teacher always placed it in the same spot, so he could cross off the different activities before transitioning to the next one. It worked like a charm most of the time! His teacher also tried to stay on top of letting me know about any schedule changes ahead of time. Of course, sometimes there were unexpected changes, but that’s another story for another time…

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Ymkje Wideman-van der Laan Ymkje is a writer, editor, and proofreader. She is the editor-in-chief of Motivated Magazine since 2002, and the Web Content editor for Autism Consulting & Training, Inc. and the International Association for Families and Educators (IAAFE) (www.AutismEducates.com). She has written a number of short articles on a variety of subjects, including autism related topics. In 2006, she assumed the care of her then six-month-old grandson. She cared for him full-time for six years, and continues to help with his care to this day. She is his advocate and is passionate about promoting autism awareness since he first showed signs of high-functioning autism. Her grandson was diagnosed officially in 2009, and is the inspiration behind the Autism Is...? series of childrenâ&#x20AC;&#x2122;s books she wrote for him, which are available from www.createspace.com/3809107 and www.amazon.com. She is studying, and has currently completed a number of Certificate Courses on autism, including: What early Interventionists Should Know; Assessment for Identification; Cognitive Differences; Language and Communication; Overview of Social Skills Functioning and Programming; Restricted Patterns of Behavior, Interests, and Activities; Screening Across the Lifespan for ASD; Sensory Differences; Antecedent-Based Interventions (ABI); Differential Reinforcement; Discrete Trial Training; Extinction; Functional Communication Training; Home Base; and Naturalistic Intervention. You can learn more about her and her work on her websites at www.ymkje.com and www.autism-is.com, on her Facebook page at facebook.com/Autism.Is, and on LinkedIn.

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in my opinion

The need to speak out

Valerie Foley is the author of “The Autism Experience: International Perspectives on Autism Parenting,” lyricist of “Through My Eyes” (the unofficial anthem for autism) and a writer of kids television in her spare time. Whether you agree with her or not, Valerie is always worth reading... This month Valerie asks can we have a conversation about the “V” word?

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in my opinion

Can we talk? by Valerie Foley

On August 27 2014 Dr William M Thompson, a senior scientist with the US Centre for Disease Control, revealed in a statement that he had participated in a 2004 study into MMR/Autism links where he and his coauthors had “omitted statistically significant information data”. In the Statement released by his lawyers Dr Thompson said: “The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed”

Naturally, many who consider themselves affected by this falsification were up in arms. Articles and updates flew around social media. Appeals rang out across the world for media coverage, explanations and retribution. The CDC issued a response, reassuring the world that nothing actually untoward happened, that they were merely massaging the available data for greater validity and that measles was indeed a nasty virus preventable by vaccination. CNN got itself embroiled in the issue by repeatedly removing and reposting blog posts (known a ireports) on its site, and then broadcasting a story that denied the whole issue had limbs.

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And in the middle of it all, my family and I sat in a major childrenâ&#x20AC;&#x2122;s hospital with a bunch of excellent neurology professionals. We are trying to work out why our son, who went silent after his MMR, at the exact time the study was released, and who has endured transverse myelitis,

chronic gastro-intestinal disease and intractable epilepsy, has become near neuro, immune and gastro typical since we trialed him on massive doses of prednisone (the same drug that has shut down the circulation in his extremities, stacked on six kgs in four weeks and left him with a constant tremor in both hands, but I digress).

Valerieâ&#x20AC;&#x2122;s son Billy Autism World Magazine - 96

As I listened, learned and watched dedicated doctors scratching their heads and muttering ‘inflammation, idiopathic, auto-immune or something?’ I found myself wanting to raise my hand and say, ‘Can we talk? We all saw what happened here.’ These are doctors who signed a form many years ago to say, ‘Do not immunise this child any more. Signed, A Neurology Team from a Major Children’s Hospital.’ These are doctors who delight in every advance and decry every setback our child experiences. These are genuine, honest, dedicated professionals who are doing their job. Like Dr William M Thompson from the CDC. While CNN, and TIME and Forbes (oddly silent for now, given their previous drum beating) and Snopes (I know, really?) scramble to deny any feasible reality to anything

resembling a question over vaccine safety, real doctors and real scientists and real families are well aware there’s not just a gigantic issue, there’s a growing pressure to address it. But we can’t. For some reason, we can’t have a rational adult conversation that has the words ‘vaccine’ and ‘autism’ in it. Not even if we ban the prefixes ‘pro’ and ‘anti’. Even if we liberally apply the word ‘safety’ instead. What is the problem here? It’s not about the prickly issue of child health, because we all know R Kelly told us children were our future before he made a few crucial errors. If we were genuinely concerned about child health, we’d be we’d be all over working out a solution to 2% (up from 0.000000001% 20 years ago) of our kids being chronically ill.

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It’s not about party politics or socio-economic issues or geographic boundaries because autism crosses all of those.

He knows he contributed to the injury of subsequent children, including my own.

If we listen to Forbes and TIME, it’s about crazy people and conspiracy theories. If we listen to vaccine-injured autism families, it’s about money and the power it wields over government and health policy. If we listen to autism self advocates, it’s about cruel humans and their driving need for sameness.

Instead of standing up as a world and saying, ‘Shit. OK. Let’s really look at this’, we are told to remember that vaccines are awesome at preventing measles and emotions are poor guides for reliable actions. We are told to again, question the credibility of those calling for change, and not to consider the possibility that change is actually a valid option.

No matter what, it’s an issue. The media has grappled with bigger adversaries.

We know science gets it wrong, all the time (the Earth is not the centre of the universe after all).

Why is this one so off limits?

We know public health policy has to change sometimes (cigarettes were healthy once).

A man whose job it was to honestly analyse statistics relating to MMR administration and autism diagnoses participated in fudging the figures.

Medical conditions morph from annoyance to emergency regularly (diabetes, mesothelioma, radiation sickness).

He knew what he was doing and it made him uncomfortable.

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In autism terms, these things are clear to me: • Kids all over the world went from healthy to disabled closely following routine childhood medical intervention. • Kids all over the world didn’t develop like their peers for no medical reason that any medical professional could name. • Kids all over the world are struggling to be kids in numbers we have never seen before.

It might be caused by vaccines or nutrition or chemicals or lifestyle or all of them and so much more, but the fact remains, it is happening. More and more every single day. Obviously, it has happened to us. I have met many in our travels who have suffered similar fates. We are all different, but we share one thing – our kids are sick, and most of them weren’t born that way.

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Many of us do not identify with the highly promoted theories of fast evolving difference, Silicon Valley Syndrome and nerd-gasm. I work in TV. I see, all the time, how a story emerges from the need to fill a black hole, the need to attract viewers or the need to share important information. I live with a child who confounds his own doctors; who charmed everyone with his precocious skills then terrified everyone with his sudden silence; who has the atypical version of every diagnosis he gains. There is much I don’t understand in this world, but this week, my lack of understanding has reached new bounds. Why hasn’t one mainstream media asked the obvious question(s)? Why did the CDC mandate the pre-publication reanalysis of figures they knew would be contentious.

Why have they promoted those figured vigorously for 10 years as evidence that parents like me are crazy, despite the fact they knew they altered them to re-orient the study outcomes? If they believed what they were doing was right, why not own it up front? Why leave a smoking gun dormant for a decade? Surely this is interesting to someone? Government? Media? Business? Someone? Parents of disabled children around the world are interested, because many of us saw it with our own eyes. We didn’t need a study to tell us that our babies went dark after an immunization. We didn’t need our primary care doctors to tell us we were mistaken. We didn’t need the message that our fears were irrational or our reality was inevitable.

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“No tin foil hats. No hysteria.

No viliﬁcation. No ﬁnger pointing.”

We are not helicopter parents (at least not by choice). We are autism parents. Why is it that those unaffected by autism (or unwilling to challenge its inevitability) are so vehemently disinterested in talking about these revelations? The information being shared is from the source we have been trained to trust- the CDC. The guys who look after America’s health, and by default, the world’s domestic health policies. Surely this is a moment for what?

Permission to speak. A chance to have an adult conversation. No tin foil hats. No hysteria. No vilification. No finger pointing or lying or obfuscation. What we need is respect, conversation, listening, sharing, questioning, common ground, commitment to genuine understanding. Media…? Government…? Business…?

Can we talk?

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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 - 102

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