Autism World Magazine Issue 16

Issue 16 / May 2014

essential reading for those who care

Autism W rld

Magazine

WANTED: Secret Agents Is RDI right for you?

The noise inside the birdcage

A nutty therapy idea that worked!

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Autism W rld Welcome to the PDF download version of Autism World Magazine If you are opening this on an iPhone or iPod use the “Open in iBooks” option.

For all other PDF Reader, please refer to your specific instruction manual.

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Editor’s Note Welcome to Autism World Magazine. April may have come and gone but we continue forward with our brand of awareness, acceptance and action sharing the best in ASD thoughts and advice from across the world.

This month we bring you tales of spies and agents as we delve inside the Secret Agent Society with Jane Coleman and Rachel Stewart.

We continue with our popular focus on RDI as Maisie Soetantyo takes a parent’s point of view and asks, is RDI right for you?

New columnist Ymkje Wideman-van der Laan cuts us some slack, while Lily Holland balances our insides.

Our Tried and Tested columnist Monique Simpson goes all left field with her ‘nutty therapy’ idea that worked. You’ll have to go to page 30 to find out what she did.

In EAT PLAY LEARN, Jacinta O’Connor supports our immune system with the GAPS Diet; we create social stories with Catherine Crestani and Diana Wolf, and Libby Majewski guides us through Individual Education Plans.

And to make you think... we cram herds of elephants in a room and a canary into a coal mine.

If you are reading this eMag for the first time, do please consider supporting the publication by becoming a subscriber. Autism World Magazine is a not-for-profit publication and it is only through subscriptions, supporters and like-minded advertisers that can we continue to produce such a remarkable and forward thinking publication.

More at autismworldmagazine.com Best wishes to you and your family,

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

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CONTENTS 08

09

17

SPY&KIDS

Jane%Coleman%&%Rachel%Stewart

Secret&Agent&Society&Solving&the& mystery&of&social&encounters

CUT&YOURSELF&SOME&SLACK Ymkje&Wideman=van&der&Laan The&importance&of&self& compassion.

47

71

LIVING&WITH&AUTISM&AS&AN&ADULT by&Monica&Holloway,&Brian&Gutierrez&and& Wills&Price ** HOW TO USE THIS CONTENTS PAGE ** CLINK/TAP pictures, numbers or text to jump straight to your chosen page.

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Publisher:

ISSUE 16 / May 2014

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© Copyright 2014 MagsWest PO Box 99 Mosman Park WA 6912

info@magswest.com

Autism World Magazine is available digitally for iPad, iPhone, Androids, PC or portable device.

Subscribe via the Apple Newsstand or Google Play Or CLICK HERE

Editor:

Iain Croft Website:

autismworld magazine.com 07 HOW%ABOUT%THEM%APPLES Heidi%Heeman

55 YOU,%YES%YOU AWM

24 PARENT%READINESS%FOR%RDI Maisie%Soetantyo

56 CREATING%SOCIAL%STORIES Catherine%Crestani%and%Diana%Wolf

30 TRIED%AND%TESTED Monique%Simpson

64 INDIVIDUAL%EDUCATION%PLANS Libby%Majewski

36 UNSUNG%HERO%J%CLAIRE%MCCURDY by%Leesa%Cavanagh

80 ELEPHANT%HERDS%IN%THE%ROOM Valerie%Foley

39 CARING%FOR%CARERS Lily%Holland

85 CANARY%IN%THE%COAL%MINE Alyssa%Aleksanian

47 GAPS%FOR%YOUR%IMMUNE%SYSTEM% Jacinta%O’Connor

89 NAMING%OURSELVES Maria%and%Athena%Iliou

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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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HOW

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ABOUT THEM APPLES

with Heidi HeemanJust a reminder to everyone what we do each day.

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facebookfacebookfacebookfacebookfacebookfacebookzfacebookfacebo facebookfacebookfacebookfacebookfacebookfacebookzfacebookfacebo facebookfacebookfacebookzxxxxxxxxfffffffffffacebookfacebookfacebook facebookfacebookfacebookxzzzzzfacebookfacebookfacebookfacebook

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Spy kids

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How does your garden grow?

Solving the mystery of social encounters

by Jane Coleman and Rachel Stewart

Getting a child to attend therapy is not always easy.

Unless your child has an autism spectrum disorder and they’re enrolled in the Secret Agent Society (SAS) program.

missile launchers, code cards and secret missions to keep things interesting, children going through the SAS program are doing what typically developing children do every day – learning new skills.

Yes, you read correctly. There is a program that turns children with social and emotional challenges into secret agents. With real-life walkie-talkies to communicate with each other and

The difference is that they’re learning new skills in a setting which is designed to feel safe and comfortable for children who struggle with resilience, social skills and emotion management.

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Creator Dr Renae Beaumont knows the program doesn’t feel like therapy to her young clients, and she wouldn’t have it any other way.

“SAS is designed to engage children who aren’t easily engaged, which is why the program has been so successful,” Dr Beaumont said.

The fact that SAS is the most successful social skills program in the world for children aged eight to 12 with highfunctioning Autism Spectrum Conditions proves she’s got the balance between psychological science and child engagement just right.

“I wanted to capture the interest of children so that learning was fun rather than a chore or something Mum or Dad had to drag them to.”

A randomised, controlled trial found the social and emotional skills of 76 per cent of children with Asperger’s Syndrome improved to within the range of typically developing children after doing SAS.

Dr Beaumont’s interest in autism began as a teenager when she taught flute to a young boy with Asperger’s Syndrome.

She went on to develop SAS as part of a PhD in clinical psychology at the University of Queensland.

CLICK ON PICTURE WHEN ONLINE TO PLAY THE VIDEO

http://youtu.be/jEJuvqMgbI0 http://youtu.be/jEJuvqMgbI0 http://youtu.be/jEJuvqMgbI0 http://youtu.be/jEJuvqMgbI0 http://youtu.be/jEJuvqMgbI0 http://youtu.be/jEJuvqMgbI0 Autism World Magazine - 12

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SAS features a multi-level, spy adventure, computer game with animated characters and virtual reality missions.

Children attend group sessions to practise new skills with peers in a supportive environment and gain feedback from group mentors.

Sessions include role-plays and fun activities such as the Helpful Thought Missile action game, Challenger board game and Secret Message Transmission Device walkie-talkie game.

The program can be delivered over 12 or 24 sessions in a private practice, community or school setting. Parents and teachers are an integral part of the group program and receive resources and support to help their ‘cadets’ develop and practise new skills in real-life settings.

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SAS is the most successful social skills program in the world for children aged eight to 12 with high-functioning Autism Conditions.

Tia from Victoria’s SAS graduation photo.

Tia has Asperger's Syndrome

The original randomised controlled trial that began the SAS journey is now available to download on our research page (see www.sstinstitute.net). By the end of the trial, the social skills of 76% of child participants who had clinically significant delays in socialemotional functioning improved to within the average range. This is currently the largest clinically significant change in the world for a social skills program for children with high-functioning autism.

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Brisbane mother Sue Stumer is one mother who has seen a difference in the way her son Ben interacts with others after doing SAS. “Our son’s interests have widened, and he is now able to greet people appropriately most of the time,” she said.

“We even had a friend from school come to our home for the first time during the school holidays, which was great to see.”

Though originally developed for children on the autism spectrum, SAS has now been shown to be effective with children with a range of social-emotional challenges including shyness, anxiety, anger, ADHD or difficulties getting along with others.

The program is now global with over 500 practitioners trained to deliver SAS in England, Ireland, United States, Canada, Hong Kong, United Arab Emirates, Brazil, New Zealand and Australia.

Families can access SAS through a trained practitioner or purchase the computer game pack and board game separately.

For more information visit sst-institute.net

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Cut Yourself Some Slack!

The importance of self-compassion

By Ymkje Wideman-van der Laan I recently read a quote that resonated with me. It went, “There is no such thing as a perfect parent. The only requirement is to be one.” I smiled as I read it, remembering how I was when I was a new parent, caring for the first child in my care.

With number three, I still tried to keep some semblance of order, and the kids still looked neat and clean, but perfection went out the door. I don’t think I have to tell you what happened when numbers four, five, and six arrived.

Every night I would set out his ironed clothes for the next day, polish his little leather shoes, and make sure the play area and house were spotless.

Fast forward some twenty years, when I started caring for my six-month-old grandson, Logan. I tried my best to revive those days of perfection, and have things in tip-top shape. However, Logan was a handful, as they say, more so than any of my other children had ever been. I didn’t know then, but learned later that his hyper-activity and frequent crying were due to autism, Sensory Processing Disorder (SPD) and borderline ADHD, which was diagnosed officially when he was three.

I took pride in having a clean, nearly “perfect” home, and in having my oldest look his very best.

When number two came around, I didn’t keep up quite as well, but let’s say the clothes were ironed every other day, and the shoes polished not as often.

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It took me some time to digest the news of his “disability”, but once I learned more about autism and the importance of early intervention, my tendency for perfection kicked in once again. I was determined to do the very best for him, and tried to closely follow every instruction from his teachers and therapists. Additionally, I read whatever book, blog or article I could get my hands on, and tried to participate in any social activities the best I could as well.

After a while, it became obvious that I was not going to be able to keep up, physically and emotionally, with all the demands that come with caring for a child with autism. I was stretched to the limit, and something had to give.

I was fortunate to have met an amazing parent advocate who became a dear friend in the process. She, after I cried on her shoulder a few times, recognised the problem.

Next to having the sole care of my grandson and having to keep up with my on-line editing work, the pressures of managing school meetings and IEPs to find solutions to numerous incidents, doctors and dentist appointments, and the need to work around other family related issues, were getting to me. Her advice in short was, “Cut yourself some slack!”

I knew she was right, but my circumstances hardly afforded it.

Funds were tight, and I didn’t really

have anyone to help or give me a break from time-to-time. Still, I knew I needed it.

When I thought about it more, I realised I first needed a mindset change. In my desire to do everything so perfectly, and give my grandson the very best at every opportunity, I was over-extending myself. I had to come to grips with the fact that even if I had to skip an activity and do something simple like putting my feet up and sitting in the back yard with a cup of tea while my grandson chased butterflies and collected bugs, was not going to hurt him. In fact, it did both of us a world of good.

I also started attending a small community church in our neighborhood that had a supervised playroom where Logan could hang out for an hour or two while I attended the service. I had been hesitant about doing this, as I was not sure how the staff would be able to handle Logan along with the other children.

I was pleasantly surprised at how helpful they were, and even if they didn’t handle every situation “perfectly” or the way I would, it was a good opportunity for my grandson to play with other children, and for me to get a break and make new friends.

One of the key things that helped me find a better balance in taking care of my grandson and taking care of myself was to learn to ask for help and accept it when it was offered.

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My grandson, Logan, catching bugs in the backyard while I put my feet up and had a cup of tea.

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I had always felt bad to ask others to take care of my grandson, and often declined offers that would have afforded me a break. Besides not wanting to burden others, it took me awhile to realise that it also had to do with trusting others with him. I raised him and knew him in-and-out, and I worried that others might not recognise some of the things that led to meltdowns, or if he had one, would know how to bring him out of it. I loved him so much, and didn’t want him to have to go through anything that might be difficult for him, but in being so protective, I realised I was actually robbing him of some great teaching moments—and robbing myself of much needed rest.

Learning to cut myself some slack has been an ongoing process and I am still learning.

My situation changed when my grandson moved back in with his dad and his girlfriend in the summer of 2012. It was an adjustment for both of us, but I am happy to say that things have worked out wonderfully. I now have more time for myself, though I am still very involved in Logan’s care.

It was not easy to let go at first, and accept that my role as primary caregiver had changed, but it has been good for me. It made it possible for me to start taking care of myself better, and I am happy to tell you that I finally took the plunge and that I took the first real vacation in nearly seven years in 2013! I’m cutting myself some slack!

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Some Simple, Inexpensive Ideas for Taking Care of Yourself •

Incorporate activities that you enjoy, even when you don’t really feel like it. Listen to music, work in the garden, engage in a hobby.

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Pamper yourself. Take a warm bath and light candles. Read a nice book, or go out for dinner once in awhile with family or a close friend.

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Eat balanced meals to take care of your body. Avoid fast foods as much as possible.

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Find time to exercise, even if it’s a short walk every day. I used to take a “nature walk” with my grandson almost every day, weather permitting.

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Do the best you can to sleep at least seven hours a night.

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Laughter really is the best medicine. Buy a light-hearted book or rent a comedy. Whenever you can, try to find some humor in everyday situations.

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Keep a journal. Write down your thoughts and feelings. This helps provide perspective on your situation and serves as an important release for your emotions.

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Arrange a telephone contact with a family member, a friend, advocate, or a volunteer so that someone calls regularly to be sure everything is all right. You can ask this person for help with contacting other family members, or let them know if you need anything.

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Try to set a time for afternoons or evenings out, and ask a family member or friend to be a sitter.

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Seek out friends and family to help you so that you can have some time away from the home. If it is difficult to leave, invite friends and family over to visit with you. Share some tea or coffee. It is important that you interact with others.

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Last, but certainly not least, give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better parent or caregiver for it.

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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 children’s books she wrote for him, which are available from https://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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IS RDI FOR YOU?

with Maisie Soetantyo

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Parent Readiness for Starting an RDI Program Maisie Soetantyo This article is written as a continuation of the Relationship Development Intervention (RDI) series, a remediation program designed to be implemented by parents who aspire to build a closer relationship and dynamic thinking abilities with their ASD-diagnosed family member.

What are conditions parents have to consider before signing up for an RDI program? Starting anything new in general is not easy for anyone, because one must leave his/her comfort zone and commit to an unfamiliar territory. And for parents with special needs children, starting a new program often require even bigger financial, physical, emotional, mental and time investments.

The initial process of an RDI program begins even before a couple decides to sign up to work with a certified RDI consultant.

It is critical that both parents meet with their potential RDI consultant and feel a ‘connection’ for a long term partnership in their autism remediation journey.

One of the most important foundations in a good RDI program is a high level of trust not only between parents and their child, but also between parents and their consultant.

Thus parents should take their time to learn about the RDI program, and think about their readiness as a family unit prior to starting this new journey.

Two veteran certified RDI consultants, Sharon Bradbrook-Armitt and Lisa Palasti are both parents of a now young adult diagnosed with ASD. They reflected on their beginning journey of their RDI program, and below were experiences they shared:

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Commitment as a Couple For both Sharon and Lisa, it was important that the learning process involved their spouses from the get go.

This included arranging meetings with their husbands’ presence, whether it was face to face or Skype meetings. Just like in any therapies, it is typical for one parent to take on a more active role as an ‘implementer’ at home, but in an RDI program it is critical that both parents understand what the current objective is.

Both parents work as a team documenting their observations and input for their consultant to determine the next steps.

Sharon said for both her and her husband, they mentally told themselves that RDI was going to be their ‘best shot’.

By believing in this together, they were able to invest time to see if RDI worked for them. In their case, they decided that they were going to temporarily put off other things, such as bio-med invention, in order to focus on their personal learning and making time to practice without getting distracted by other kinds of information.

Thus for many couples, the most important first step is to get on the same page by having a heart to heart discussion on their readiness. This includes asking themselves if they could support each other through simplifying the family’s schedule, prioritising goals, taking turns caring for siblings or giving each other time to have a break.

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Setting up a Long Term Vision as a Couple When parents receive a diagnosis with a lifelong impact for their child, it is as if a huge curve ball is being thrown at them.

This moment of uncertainty prompts a high level of anxiety in parents and endless research in finding solutions and cure. Parents might feel that they have a short window to try all kinds of treatment options available to their child.

One of the most universal challenges for parents raising a special need child is to set a vision not only for their child, but also for themselves and the rest of the family. Frequently out of crisis, a decision is made without thinking about the effects that it may have on the rest of the family.

Typically parents end up driving to multiple therapies, and very little time is spent for family quality time.

It is also easy for parents to put too much emphasis on future goals for their special needs child, without realising that many basic foundations are still missing and can only be developed under the guidance of primary caregivers at home. For instance, every parent wishes that their child can play with his/her friends at school.

However, without developing the ability for mutual engagement and communication competence with parents and siblings at home, focusing towards peer relationships at school is a tall order.

In an RDI program, couples are encouraged to set aside time to create or revisit their long term goals; what does their future look like and how do current interventions fit into it? Getting a clear goal as parents for what they want to see happen in their child’s future is critical because it ensures commitment to what parents should focus on in the mean time.

In just about any program implementations, there will be many celebratory moments where parents applaud and take pride in what their child has achieved, but there will also be plenty of moments where progress seems slow or non-existent. Having a mission as a ‘bulls eye’ in one’s mind helps parents to stay true to their short term goals and remain positive during rough times because they undoubtedly see the big picture at the end.

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Time Commitment as a Couple Sharon and Lisa both remembered that making time to learn and practice their RDI parent and child objectives was challenging at the beginning.

For new parents, implementing RDI principles is difficult when both parent and child are mentally and physically exhausted after a full day of rushing through activities.

They both recommended using small moments throughout a day to think about a current objective and practicing in small increments.

For new families, a detailed family schedule showing both parents’, the ASD child’s and neurotypical sibling’s activities frequently shows what can be simplified, what can be delegated or prioritized, as well as pockets of time for quality engagement opportunities.

In addition to allocating time to mindfully practice RDI objectives throughout their day, parents would also need to set aside time to evaluate video clips of their work with their child, as well as using RDI resources available on the online platform for personal growth.

Feeling Empowered as a Couple Both Lisa and Sharon agreed that having their spouses completely on board with the RDI program goals help them to compliment each other’s work in the program. It is too easy to be critical of oneself, but a spouse can help to put things into perspective when he gives feedback or helps watch the video clips of RDI activities.

Lisa remembered that RDI was going to be a big deal and life changing for their family, but the hard work needed to start with her and her husband. And that included being kind to herself in terms of her competency levels, as well as being encouraging to each other when things were not going so well.

It was a big shift for her to work on her own parenting goals, instead of relying on others to develop her son’s skills. She immediately felt empowered that as a family she was going to make a lifelong impact in her son’s life.

As RDI consultants, one of our favorite quotes to share with the families we work with is “Life is a marathon and not a sprint”, which is true for any parents raising their children. Embracing an RDI program as a life style does get easier as parents become more competent, and the rewards of having a child finding a true joy in discovering what the world has to offer is well worth the hard work!

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Suggested Reading http://www.amazon.com/ gp/product/B00J4OVUJ8/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00J4OVUJ8&linkCod e=as2&tag=autismoz-20 www.amazon.com/gp/ product/B00J4OVUJ8/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00J4OVUJ8&linkCod e=as2&tag=autismoz-20h ttp://www.amazon.com/ gp/product/B00J4OVUJ8/ ref=as_li_qf_sp_asin_tl?

My Baby Can Dance: Stories of Autism, Asperger's and Success Through the Relationship Development Intervention (RDI) Program

Maisie Soetantyo

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 ‘Destination 4 Day RDI Parent Trainings’ all over the world. For additional questions or comments, contact Maisie at: catchmaisie@comcast.net

http://www.amazon.com/ gp/product/B00IRD9RME/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00IRD9RME&linkCod e=as2&tag=autismoz-20 http://www.amazon.com/ gp/product/B00IRD9RME/ ref=as_li_qf_sp_asin_tl? ie=UTF8&camp=1789&cr eative=9325&creativeASI N=B00IRD9RME&linkCod e=as2&tag=autismoz-20 http://www.amazon.com/ gp/product/B00IRD9RME/ ref=as_li_qf_sp_asin_tl?

The RDI Book ie=UTF8&camp=1789&cr

By Steve R. Gustein, Ph.D. eative=9325&creativeASI CLICK ON THE LINKS OR BOOKS TO ORDER VIA KINDLE Autism World Magazine - 29

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

A tip for helping the visually distracted.... a nutty therapy idea that worked!

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

www.connecttherapy.com

This month I thought I would share with you a slightly ‘left of field’ therapy idea.

All the children that I treat are so incredibly unique. I’m constantly testing and trialing new therapy strategies to find out what works and what doesn’t in order to get breakthroughs in therapy for each of my clients.

So I really wanted to share this strategy with you since it worked wonders for my client, Sam. It still blows me away, how incredible it is, that small changes in therapy can make such a huge difference to therapy outcomes.

Sam is a visually distracted five-year-old boy with autism. He interacts and communicates very well but the moment that something catches his eye he is compelled to go and check it out. This can be very frustrating when we are trying to work on his ability to maintain attention and develop a great connection with him. Sound familiar?

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In light of his visual seeking behaviour we needed to somehow get rid of some of the clutter in his ‘learning spaces’ to minimise as many distractions as possible. But as most of you will appreciate, mess and clutter are a natural part of having a child and you can’t simply lock everything away in a big box every time your child gets distracted by something new.

In Sam’s case this was no different. It simply wasn’t possible to have a room in his house completely clutter free… so we needed to think a little creatively….a little outside the box!

The solution was simple but effective.

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“Understanding your child’s unique nervous system is crucial”

We decided to use a TENT - one of those very large, light weight, collapsible sunshade tents that you might take to the beach, that you can just spring open anywhere. We faced the opening towards the wall and filled it with comfy pillows so that it was a fun, enticing and reassuring place to spend time in. Sam loved it! Better still he was able to concentrate and focus on a single activity for nearly twenty minutes without being tempted by all the other objects in the room.

Previously without the tent his best time had only been about 5 minutes. So a 400% improvement… not bad for a few minutes of creative thinking. It really was the perfect solution for Sam, to help a ‘visual seeker’ be able to focus.

I think everyone can learn something from this.....

I would recommend you taking the time to consider the unique way that your child processes information. The reason being is that when you are highly aware of this then you can make necessary adjustments in your child’s learning spaces to accommodate for these individual needs. Think creatively.

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http://www.connecttherapy.com http://www.connecttherapy.com http://www.connecttherapy.com http://www.connecttherapy.com

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Unsung Hero - Claire McCurdy - a facebook friend

by Leesa Cavanagh This lady is the Mum of a lovely little boy with Autism. Following their journey via Facebook has been truly inspiring, touching and insightful.

Claire gives her FB buddies a look inside 'her' world in a positive, sensitive and often humorous way - and it is for this reason that I nominate her.

Now I have never actually met Claire or her son Jackson in person. Quite a few years ago now, Claire contacted my family owned business (Chatterbox Toys) looking for a specific toy, and we were able to send that to her. Claire continued to purchase from us, and send personal notes and photographs about how particular items were received by her then two-year-old son. At that time, I ‘friended’ Claire on Facebook.

Claire describes herself as ‘just a Mum’ – but to me she is so super strong + down to earth + take it in your stride some days and crack it others (without apology).

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Claire and Jackson McCurdy

She gives people like me, someone she has never met, an insight into what it is like to live with Autism.

My association with Claire and Jackson totally changed our view of what it was that we were doing as a toy seller. One of the reasons we went from web-based to a Bricks and Mortar store was Claire and Jackson, and people like them, who really need us. Not just the product, but also the ear to listen, and sometimes shoulder to cry on.

Every single day I have at least one Mum or Dad who comes in and says "help me" --- I have read countless books, spoken to countless occupational and speech therapists, and met lots and lots of families ... but it is Claire, right there in my daily news feed that really helps me say "Yes, I can help you" (or at least I can try).

CLICK HERE TO NOMINATE YOUR UNSUNG HERO Autism World Magazine - 37

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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 - 38

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CARING FOR THE CARERS

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

Balancing on the inside...

In my work as a therapist I come

What coping style was modelled

across the issue of self-regulation

to you as a child? Did you have

almost daily. That is, the way that

parents who kept their cool, or

clients manage themselves - and

did they tend to lose control?

in turn, how they manage their children’s regulation.

One thing’s for sure... working at getting your child into their

In fact, clients will often come to

optimal band of arousal often

me because of their children’s

means working on your own. This

problems with self-regulation,

link provides a fairly good

only to find that they need to

explanation of the ‘optimal band

work on their own - in order to

of arousal’ and the challenges for

help their children. I know it can

kids with sensory processing

sound like a cliche but... we really

issues...

do need to put the mask on ourselves first so we can help our

www.porteracademy.org/Sensory

children.

%20Processing%20Disorder.html

How do you manage your stress

According to Lecavalier, Leonie &

levels? How do you manage your

Wiltz (2006), challenging

child’s stress levels? Are you able

behaviours in children, and stress

to regulate quickly after a sensory

in parents seem to exacerbate one

assault (like an alarm going off or

another over time. It doesn’t

a piece of shocking news?) or are

necessarily begin with one or the

you constantly overwhelmed and

other, but it can develop into

in high alert?

quite a stressful spiral.

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CARING FOR THE CARERS

One that’s difficult to break. I’ve

When you consider how much

seen this first hand a number of

more focused on our children’s

times, and I wish it were as easy

wellbeing we are as autism

as saying ‘okay, stop reacting to

parents, you know that ‘not

that behaviour’ or ‘stop letting

reacting’ to particular behaviours

that stress you’. It is of course

is almost impossible.

never that easy.

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CARING FOR THE CARERS

It’s often necessary to examine

We need to be in the best shape

our upbringing and consider

possible - mentally, physically,

whether we’re happy to parent in

and emotionally. Sometimes that

the same way that was modelled

means examining the tools we

for us.

were given and making changes.

Time and again, I see clients who

Even when we survived parenting

want strategies to manage their

styles that were less than

children and wind up healing

adequate, it’s a whole other thing

themselves. I guess you could say

to expect the same to work for a

even though I work mostly with

child with special needs. I’ve

adults - a lot of the time I help

worked with clients who have

kids by helping their parents.

experienced varying degrees of trauma in their childhoods... no

Jon G Allen PhD, in Coping with

matter how well they survived,

Trauma (2005) says:

when faced with the job of

“The mother’s touch - holding,

parenting a child with big needs,

rocking, warming, and providing

the stress can be too much.

a wealth of sensory stimulation

Managing autism can be

affects physiological, endocrine,

overwhelming enough with no

and neurochemical functioning.

historical antecedents of trauma.

Thus, attachment relationships

For those of us who already have

play a key role in the healthy

a stress sensitivity it becomes

development of the nervous

necessary to address this first.

system.

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CARING FOR THE CARERS

On the other hand, early trauma

If you don’t have the resources to

in attachment relationships puts

get to a counsellor, the following

the brain into an alternate

book by Dan Siegel offers a step-

developmental pathway; albeit

by-step approach to developing

well-adapted to a stress-filled

more awareness and resilience,

world, this adaptation comes with

so you can give your children the

the high cost of stress sensitivity.”

best ‘you’ there is.

There’s no doubt that our self-

Parenting From The Inside Out

regulation style is crucial. A child with special needs will often put

Click on the book below to order

us in a position of stress sensitivity anyway. We are hypervigilant because we need to be - if we also have stress sensitivity due to our history ... well, it’s easy to see why it becomes so important to learn new ways to regulate.

If you feel (and we usually have a sense of this) that your history is hindering your ability to cope please know that there’s a lot of help out there.

http://books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y http://books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y http://books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y http://books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y http://books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y http:// books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y http://books.google.com.au/books/about/ Parenting_From_the_Inside_Out.html? id=hnRWT8s9ZAkC&redir_esc=y

Autism World Magazine - 43

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CARING FOR THE CARERS

The good news is - if our own

Take good care - and if you’re not

childhoods were less than ideal

convinced that your wellbeing

we are not destined to repeat

should be a priority, watch this

history - as long as we can make

fabulous TED talk by Dr Libby

sense of what happened. Dr Siegel

Weaver...

says ‘the best predictor of a child’s security of attachment is

Click on the image below to view.

not what happened to his parents as children - but rather how his

Lily X

parents made sense of those experiences.’

CLICK ON PICTURE WHEN ONLINE TO PLAY THE VIDEO

http://youtu.be/tJ0SME6Z9rw http://youtu.be/tJ0SME6Z9rw http://youtu.be/tJ0SME6Z9rw http://youtu.be/tJ0SME6Z9rw http://youtu.be/tJ0SME6Z9rw http://youtu.be/tJ0SME6Z9rw Autism World Magazine - 44

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CARING FOR THE CARERS

Lily Holland Counsellor/Psychotherapist.

Lily practices in Randwick, Baulkham Hills or via Skype Contact: lily@lilyholland.com or 0402 888 097 www.lilyholland.com

Got a question for Lily?

Or a subject you’d like her to discuss?

An experience to share?

Email us at support@magswest.com

Autism World Magazine - 45

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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$GAPS$ PROTOCOL$AND$ SUPPORTING$ YOUR$IMMUNE$ SYSTEM$ Jacinta'O’Connor' Jacinta O’Connor Nutritionist Naturopath Certified GAPS Practitioner MINDD Practitioner Additive Alert Presenter Kardinya, Western Australia

As#the#southern#hemisphere#weather#starts#to#cool,#cold#and#flu#season#emerges.#It#is# important#to#support#our#immune#system.#Current#research#is#indica:ng#70#=80%#of#our# immune#system#is#located#in#our#gut.#When#you#address#gut#issues,#you#address#immune# system#issues.

Many#people#following#the#GAPS#Protocol#are#relieved#to#find#they#make#it#through#winter# without#experiencing#several#long=las:ng#bouts#of#cold#and#flu,#which#they#would#have# typically#experienced#each#winter,#prior#to#GAPS.##As#the#GAPS#Protocol#restores#gut#health,# their#immune#system#func:oning#improves.# As#you#con:nue#to#work#on#your#gut#health,#let’s#look#at#the#top#ten#influences#which#boost# immunity#and#the#top#ten#influences#that#can#damage#our#immunity,#as#proposed#by#Dr# Natasha#Campbell=McBride.

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Top'Ten'Influences'that'Boost'Immunity 1. Fresh(animal(fats,(from(meats(and(dairy,(and(cholesterol5rich(foods,( par7cularly(raw(egg(yolk • Add#egg#yolk#to#a#cup#of#your#stock#or#broth#for#a#delicious#creamy# snack#between#meals.# • Egg#yolks#can#be#mixed#into#soups#and#casseroles#as#they#are#cooling# down#ready#to#eat.

2. Cold(pressed(oils(such(as(olive(oil,(fish(oils,(nut(and(seed(oils • Cold#pressed#oils#can#be#mixed#with#lemon#juice,#honey,#garlic#and# some#herbs#to#make#a#delicious#salad#dressing.

• Add#cold#pressed#oils#to#soups,#stews#and#roasted#vegetables#as#they# are#cooling#down,#ready#to#eat.

3. Onions(and(garlic • Enjoy#with#lightly#cooked#scrambled#eggs#for#a#real#immunity# boos:ng#meal.# 4. Freshly(pressed(vegetables(and(fruit(juices • Include#loads#of#leafy#greens#in#your#daily#freshly#pressed#juices#such# as#kale,#spinach,#chard,#leQuce,#beet#leaves#etc.

5. Regular(consump7on(of(greens( • #Parsley,#dill#and#coriander#can#be#added#to#daily#freshly#pressed# juices#and#enjoyed#in#soups#and#stews.

6. Probio7c(supplementa7on(and(fermented(foods • #Sauerkraut,#beet#kvass,#crème#fraiche,#kefir,#yogurt,#fermented# buQer#and#many#more!

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7. Contact(with(animals • Horses,#chickens,#dogs,#cats,#guinea#pigs#etc.# • Having#a#pet#in#the#family#can#do#a#lot#for#children’s#immunity.

8. Swimming(in(unpolluted(natural(waters## • Oceans,#rivers#and#lakes#–#take#your#shoes#off#and#walk#in#the# shallow#waters#if#you#don’t#feel#like#swimming.

9. Physical(ac7vity(in(the(fresh(air • Your#lympha:c#system#needs#your#body#to#move#in#order#for#it#to# move#effec:vely.#The#Lympha:c#System#is#not#pumped#by#your# heart,#as#many#people#believe.#Lymph#is#circulated#by#muscles#and# movement,#including#the#movement#of#your#diaphragm.#So#start# moving#and#taking#lovely#deep#breaths.

• We#are#so#blessed#with#an#abundance#of#fresh#air,#sunshine#and# green#spaces#in#Australia.#but#no#maQer#where#you#live • #Make#it#a#weekly#treat#to#take#a#walk#with#nature,#while#deeply# breathing#in#fresh#air.#It#is#so#invigora:ng.# • Mark#:me#in#your#calendar#for#fresh#air#ac:vity.

• Make#:me#in#nature#or#a#trip#to#the#park#to#kick#the#football#as#a# ‘treat’#for#your#child.#In#our#society,#treats#o]en#become#sugary# based#snacks.#A#healthier#alterna:ve#is#to#find#treats#that#are#based# nature#and/or#an#outdoor#physical#ac:vity.# 10.(Exposure(to(sunlight(and(sensible(sunbathing • Using#natural#sunscreens#only#on#our#scorching#hot#days.

• Beau:ful#sunshine#on#our#skin#will#facilitate#Vitamin#D#produc:on.#A# healthier#alterna:ve#to#supplemen:ng#with#synthe:c#Vitamin#D.#

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Enjoy#your#freshly#pressed#juices,#eat#your#sulphur=rich#foods#such#as#onion# and#garlic,#and#your#fermented#foods,#pat#your#dog,#hug#your#chickens,# expose#your#skin#to#the#sunshine#sensibly,#breathe#deeply#and#enjoy#being# surrounded#by#nature.# Your#body,#and#its#amazing#immune#system,#will#be#very#apprecia:ve.

Jacinta#and#Daisy#the#Dog,#Mocha#Mama#and#her#Chicks.

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Top'Ten'Influences'that'Damage'Our'Immunity 1.

Sugar(and(everything(containing(it# • Sweets,#so]#drinks,#sweet#biscuits#and#chocolates#etc.

2.

Processed(carbohydrates# • Cakes,#biscuits,#potato#chips,#snacks,#boxed#breakfast#cereals,#white# bread#and#pasta.

3.

Chemically(altered(and(ar7ficial(fats# • Margarine,#buQer#replacements,#cooking#and#vegetable#oils,# processed#foods#prepared#with#these#fats.

4.

Lack(of(high(quality(protein(in(the(diet • Your#diet#should#be#rich#in#meats,#fish,#eggs,#dairy#products,#nuts#and# seeds.

5.

Exposure(to(man5made(chemicals# • Cleaning#and#washing#chemicals,#personal#care#products,#paints,#fire# retardants,#petrochemicals,#pes:cides#etc.# • Choose#one#cleaning#product#per#week#to#change#over#to#a#more# natural#cleaner.

• Choose#one#personal#care#product#per#week#to#change#over#to#a# ‘healthier’#choice.#A#rule#of#thumb#when#choosing#a#personal#care# product#–#If#you#cannot#pronounce#something#on#the#ingredient#list# and/or#you#don’t#know#what#it#is,#then#do#NOT#purchase#that# product.#

6.

Exposure(to(man5made(radia7on • Electronic#screens#(TV,#computers,#tablets,#play#sta:ons#etc),#mobile# phones,#high#power#electricity#lines#etc.

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7.

Drugs( • An:bio:cs,#steroids,#an:depressants,#painkillers,#an:=cancer# medica:on,#an:=viral#drugs#etc.

8.

Lack(of(fresh(air(and(physical(ac7vity • Limit#screen#:me#and#encourage#:me#outdoors.#

9.

Lack(of(exposure(to(sunlight.

• Take#your#shoes#off,#walk#on#the#grass#barefoot#and#enjoy#some# sunshine!#

10.

(Lack(of(exposure(to(common(microbes(in(the(environment.

• #Living#in#a#too#sterilised#environment#is#strongly#associated#with# compromised#immunity.#The#immune#system#needs#contact# s:mula:on#from#the#microbes#in#our#environment.

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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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Creating Social Stories with Catherine Crestani and Diana Wolf

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Social'stories

(are(a(very(useful(tool(in(helping(your(child(

understand(new(rules/rou7nes(or(expected(behaviours.(They(are(a(visual( story(that(explains,(in(short(simple(steps,(what(is(expected(of(your(child(for( that(par7cular(behaviour(and/or(rou7ne.( When(wri7ng(a(social(story,(you(need(to(use(posi7ve(language(and(write(in( first(person.(For(example,(‘My(name(is(Grace(and(I(like(shoes.(I(like(to(use(my( hands.’(When(commen7ng(on(behaviours,(always(write(about(the(desirable( behaviour(in(a(posi7ve(manner.(For(example(‘My(hands(are(used(for(waving,( high5fiving(and(clapping’(rather(than(‘not(for(hiWng’.( Each(story(should(contain(a(7tle,(contents((e.g.(the(story)(and(an(ending(that( reinforces(the(behaviour(in(the(story.(The(first(sentence(should(introduce( your(child(and(have(something(about(them((e.g.(likes/interests)(so(that(your( child(can(relate(to(the(story.( The(story(then(follows(on(to(describe(the(rou7nes/behaviour(expected(for( your(child.(It(should(focus(mostly(on(the(posi7ve(consequences(of(the( rou7ne/behaviour.(Make(sure(you(keep(your(sentences(short(and(simple(to( cater(to(your(child’s(understanding.(( When(choosing(pictures,(photographs(can(oZen(work(well(but(picture(images( that(relate(to(the(situa7on(are(equally(as(powerful.(Try(and(keep(your(stories( short,(with(just(a(few(steps((see(below),(as(well,(in(order(to(maintain(your( child’s(interest.

Social(stories(some7mes(don’t(work(which(may(be(due(to(the(length(of(the( story,(complexity(of(the(language(used,(there’s(too(many(behaviours( addressed,(the(story(doesn’t(relate(to(the(child,(or(your(child(may(not(be( interested.(You(can(always(change/edit(the(story(at(any(point.

We’ve(given(you(examples(here(of(a(behavioural(social(story,(as(well(as(a( rou7ne(for(using(the(iPad.(

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Next(issue(we(will(be(discussing(how(to(use( emo7onal(charts(as(visuals(for(your(child.(

Catherine Crestani and Diana Wolf are Principal Speech Pathologists at Nepean Speech and Language Services, in Penrith NSW, Australia.

Diana has more than 21 years of experience and continues to thrive on learning new ways to provide intervention to children. Catherine’s passion is for early intervention, including supporting children with ASD. ! www.nsls.com.au

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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 DOWNLOAD THIS FREE BOOKLET FROM THE AUTISM WORLD MAGAZINE WEBSITE 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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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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IMAGINE...

your magazine, newsletter, or publication on the Apple Newsstand for iPad or iPhone.

Digital Publishing.

It’s closer and more affordable than you think with magsWest.

Email: contact@magswest.com Autism World Magazine - 63

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Creating an IEP with a Developmental Focus with Libby Majewski

An IEP or Individual Education Plan is a is a living document.

A plan or programme designed for children with SEN to help them to get the most out of their education. An IEP builds on the curriculum that the child is following and sets out the strategies being used to meet that child’s individual specific needs.

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I know, I know…its Spring in the US and it is NOT the most wonderful time of year. IEP (Independent Education Plan) season is upon us and parents everywhere are preparing, researching, talking to other parents, consulting with advocates, case managers, and a variety of professionals.

All in hopes of hitting the nail on the head and creating a comprehensive plan that will take their special needs child to the next level, academically and otherwise.

No matter where in the world you may be reading this article these principles are very similar.

As one of those parents, you may be thinking that maybe next year will be the year your child will flourish and become more independent, more social, more engaged. That is definitely possible. A lot of that will depend, of course, on what type of approach you take with your child in the home setting.

It is my feeling as a developmental consultant that home is the best place to start working on addressing your child‟s deficits, whatever they may be.

However, with the right IEP, a lot can be accomplished as well.

In my experience, shifting the focus to developmental growth in an IEP can dramatically alleviate a child‟s stress level and improve their functioning both at home and school.

Chances are your child‟s IEP this year will focus on academic objectives and outlining special services like speech and occupational therapy.

Social skills may also be represented in the document. Of course, all these things are important. Sometimes, however, they are just too much too soon.

Children who have autism spectrum disorder or a related disorder, for example, often are not prepared to “use” the academic and even social skills they are learning in school in a meaningful way.

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This often leaves the child and the parents frustrated with feelings of incompetency.

As a consultant with over 20 years of experience writing IEP goals and objectives, I have learned a few important things for us as parents and professionals to consider during the IEP process.

One of the most important things, I believe, when writing IEP goals or accommodations is to ‘meet them where they are’.

In a nutshell, meeting your special needs child ‘where they are’ means understanding and programming for where they are not just in their academics but also in their socio-emotional development.

It is upon this rock that everything else grows and takes flight. Requesting (or, requiring) your child‟s school to do the same is extremely important.

As a parent, you can and should encourage all those who come into contact with your child to understand where they are in terms of not just their academic level but also in their socioemotional development. Teachers can and should begin to provide opportunities that will not overwhelm your child or make them feel incompetent.

It is important to understand that your child‟s teacher and entire team may need support and even training to learn how to put these accommodations in place. You may also need to gently push your team towards an understanding of the developmental importance of these items and how not programming for them can negatively impact your child‟s progress in the classroom.

We recommend for our clients to request certain accommodations in their child‟s IEP that focus on developmental milestones that are often overlooked by others.

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Here is a list of possible accommodations that can be built into your child‟s IEP that will help alleviate stress, increase feelings of overall competency, and improve functioning in and out of the classroom.

As a parent of a special needs child, consider requesting your child‟s teacher and staff to: 1. “Go Non-Verbal” and increase their use of non-verbal communication.

This includes increasing the use of gestures, facial expressions, and body language. A shrug indicating “I don‟t know”, a point indicating that an item they are looking for is “over there”, a confused look - these are all things that can go a long way in encouraging your child to reference the most important thing in the room (and it‟s not the paper and pencil), it‟s the teacher.

2. Go for quality over quantity when it comes to language and limit their use of spoken language including lengthy explanations, instructions, questions, and prompted responses and conversations. I am well aware that this request is one that seems contradictory to what schools are trying to accomplish with children who struggle with language (and that the goal is typically to get them to talk more). However, the children we see who struggle with language (both processing and use of expressive language) often are at pre-verbal stage developmentally and can quickly become overwhelmed and confused by language. This often sparks behaviors as the child tries to make sense of their environment and reduce their confusion and anxiety by fighting for control.

3.

Talk to share experiences – teachers can enhance the studentteacher relationship by increasing language that focuses on sharing experiences (“I‟m so hungry today!”, “Oops, I made a mistake. I‟ll try again,” “I think it‟s going to rain today”) rather than focusing on questions or quizzing them on seeing what they have learned or are retaining. Increasing this type of communication serves as a model for children to use their language in a more meaningful and shared way that is quite natural and invaluable for children‟s language and communication development.

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“Remember you can start just one or two and work from there”

4. Decrease prompt dependency by drastically decreasing the use of direct prompts so that your child begins to engage in more problem solving and cognitive growth. This means that you will have to request the teacher and staff to NOT directly tell your child what to do, when to do it, and how to do it. No more telling them, “You need a pencil. Take out your pencil box and open it.” Rather, ask them to increase their use of indirect prompts. In the pencil example, this would look like “Hmm, you need something…I bet you can find it.” And then, wait!

5. Implement “The 30 Second Rule” and increase “wait time” - children with special needs like ASD and related disorders often have processing issues and therefore they can quickly become reliant on those around them to problem solve and take action. However, they are often very capable of doing a lot more than we think they are capable of…if only given the time to process and figure out what they need to do next. So, asking your child‟s teacher and support staff to wait after they ask a question or give a direction, give an indirect prompt (“Uh oh!” while pointing to floor when something has fallen and shifting gaze back and forth from child to the floor) is a wonderful way to increase your child‟s confidence and ability to learn that they can figure things out on their own. Remember, patience is a virtue.

6. Implement “A Picture a Day” and incorporate the use of pictures in the classroom to help your child encode positive memories about their own personal accomplishments or positive interactions with their peers.

Autobiographical memory is often very weak or non-existent in children with ASD and related disorders. This means that they do not hold on to memories of positive personal memories in the same way as their neurotypical peers do. They may not remember the emotional feeling they had during a great experience working with a peer on a class project or that they shared a funny moment with a peer. And, if they do not remember the feelings of shared success or shared humor, how can we expect that they would bother to do it again? What is the point in seeking out that peer again tomorrow?

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With this in mind, it is up to the adults around your child to help them encode positive moments in their memory. Taking pictures on a regular basis, printing them out, and reviewing the pictures with your child daily is something you can ask to be put into your child‟s IEP this year. Then, a simple “Memory Book” can be created (with your child‟s help to personalize it by decorating it, making title page, etc) and reviewed on a regular basis to help your child encode those memories.

If the list above seems to be a lot to ask for all at once, start with just one or two and work from there. If you are doing these things at home, communicate to the school and teachers how it is helping and give examples. In the end, you may need to enlist the help of a consultant who is experienced in working with schools to help them understand what you are hoping to accomplish for your child and their future.

Libby Libby Majewski, RDI® Program Certified Consultant.

Owner/Director KidsAhead Consulting and Center for Development Moorestown, New Jersey www.kidsahead.net/ With over 20 years of experience in the field of autism treatment, Libby continually supports, guides, and works with families living with autism and related disorders as they journey through developmental milestones in order to achieve an improved quality of life.

Libby specialises in a developmental /cognitive model that addresses milestones that were missed in the early years of life and yet that can still be achieved.

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WWW.AUTISMSPEAKS.ORG

DCOUTO@LAGALAXY.COM

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18 + 1

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

Autism World Magazine hopes to answer some of your concerns in our 18 PLUS Section.

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Living with Autism as an Adult

by Monica Holloway, Brian Gutierrez and Wills Price Ask new questions about the experience of people with autism. What are the unique opportunities available only to a person with autism? What can a person with autism offer given their unique set of talents?

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EmilyN@ladodgers.com EmilyN@ladodgers.com EmilyN@ladodgers.com Autism World Magazine - 72

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The Upsides to Living with Autism as an Adult

By Monica Holloway, author of bestselling autism memoir, Cowboy & Wills, Brian Gutierrez, State Council-member on California State Council, first appointed Council-member with autism, and Wills Price, 16-year-old with autism.

Wills Price

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Autism is often discussed in terms of deficit, but perhaps there is an opportunity to ask new questions about the experience of people with autism. What are the unique opportunities available only to a person with autism? What can a person with autism offer given their unique set of talents?

For those who live with disabilities have an opportunity to reframe their experience as more collaborative and successful, resulting in a higher quality of life where they can share with all people their talents and abilities as contributors and as future leaders.

People with autism often lead successful and diverse lives as adults, contributing many unique talents and abilities to their environment and the community. Many of us interact with people who have autism, and yet we may not even realize that an individual has a diagnosis.

Says Jonah Lehrer in the Wall Street Journal, “The larger lesson is that, according to the latest research, these ‘deficits’ are actually trade-offs…the reality is that there are many different kinds of minds. And that's a very good thing.”

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Top Six Upsides to Living with Autism as an Adult Below is a list of upsides to having autism personally or living with someone who has autism. You may find that you have: 1.

Vast reserves on knowledge on topics of interest

2.

A greater degree of attention to detail

3.

Great appreciation for small steps along the way to bigger milestones

4.

Heightened senses or awareness

5.

A different and unique perspective

6.

Sensitivity to others in need

Keeping in mind these tips on cultural sensitivity for those affected with autism will help us to better understand how families accept, interpret and experience autism.

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CLICK ON PICTURE WHEN ONLINE TO PLAY THE VIDEO

http://youtu.be/3P_LioZ4kHE http://youtu.be/3P_LioZ4kHE http://youtu.be/3P_LioZ4kHE http://youtu.be/3P_LioZ4kHE http://youtu.be/3P_LioZ4kHE http://youtu.be/3P_LioZ4kHE http://youtu.be/3P_LioZ4kHE Brian Gutierrez speaks on Charter Cable about his role as the first appointed State Council-member with Autism.

The beauty of living with autism is that people have the opportunity to experience the world differently. Not better or worse, just differently.

Says Huffington Post Author Jackie Morgan MacDougal on her experiences with some of the upsides of autism, “Because right along with the struggles, it's those typical no-big-deal moments other families often take for granted that feel like huge, tear-inducing, heart-swelling victories for us. And it's those victories that make life all that much sweeter.�

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CLICK ON PICTURE WHEN ONLINE TO PLAY THE VIDEO

http://youtu.be/_e5sKEf3yOY http://youtu.be/_e5sKEf3yOY http://youtu.be/_e5sKf3yOY http://youtu.be/_e5sKEf3yOY http://youtu.be/_e5sKEf3yOY http://youtu.be/_e5sKEf3yOY http://youtu.be/_e5sKEf3yOY Brian Speaks: 2014 Annual Walk Now for Autism Speaks.

I couldn’t agree more. And I will say that when my son was diagnosed with autism at age three, I had no idea he would expand my mind as well as my view of the world, and have the most positive, life-changing affect on me as a person. It’s not just his autism that makes him sweet and smart and funny, but it has only added to his being “uniquely Wills.”

Monica Holloway

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ABOUT MONICA HOLLOWAY:

ABOUT BRIAN GUTIERREZ:

Monica Holloway is the bestselling author of Cowboy & Wills, a Mother's Choice Award's Gold recipient, and the criticallyacclaimed author of the memoir Driving With Dead People.

The youngest State Council-member and the first person with autism appointed to State Council by Governor Edmund G. Brown Jr. and nominated by California Senate Rules Committee was born in Southern California and was diagnosed late in childhood with Autism. At the age of 22, Gutierrez was officially appointed as State Council-member for the California State Council on Developmental Disabilities. Since then, he has been working with local school districts, national nonprofits, and all other platforms to create opportunities for those with disabilities in the community.

Holloway lives with her son and husband in Los Angeles. www.monicaholloway.com/ www.facebook.com/cowboyandwills twitter.com/monica_holloway

Click on the book picture to order Cowboy & Wills, via Amazon COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS COWBOY & WILLS

ABOUT WILLS PRICE: Animal-lover, Baseball power hitter, and history buff, Wills Price is a person with autism and is currently a sophomore in a mainstream school. The subject of the book, Cowboy & Wills, an autism memoir, Wills, has written jokes for the Lego Star Wars animated series, wrote two jokes for the 500th episode of the Simpsons, and helped to write the Simpsons episode “E Pluribus Wiggum” which was nominated for a Writers Guild Awards.

CLICK ON THE BOOK

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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 considers the need for change.

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in my opinion

The herd of elephants in the autism room

by Valerie Foley

Not wanting to deflate the hope of newly diagnosed families that their child will not be autistic one day, but wanting to protect them from the future awful feeling that they’ve been tricked into believing same.

I used to be a patter. Now, not so much. I struggle generally with heart breaking, but I’ve been trying for a while to come up with a way to do it anyway. Preferably with some intellect and guidance attached.

We’ve all been here, right?

You don’t want to spook the horses, but the road ahead for a family with a ‘quirky’ toddler is not an easy one.

I know when I was in their (newly diagnosed) shoes a decade ago, the most powerful weapon I thought I had was hope.

Really, at that time, my hope was actually denial wearing nicer clothes.

Do you pat them on the back and make comforting noises (like the doctors do), or do you blow their freaking minds and potentially break their hearts by telling them what you have learned?

Many many many people (real and virtual) gave me lots more pretty outfits to dress up my denial while we journeyed to a place where my kid was CEO of Apple and I was a hero for accepting him.

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in my opinion I now think my weapon of choice should have been thinking, not feeling. This isn’t about how we feel about our kids, that’s our business. It isn’t about how we feel about autism, which is also quite a personal matter.

We tell people we want them to fix it, without ever asking a medical doctor what ‘it’ is.

More precisely, we are told to accept that it is okay that medical doctors don’t know what it is,and we should leave it in the hands of those who will aim to ‘change’ it.

It should be about how we think. What we think our children deserve. What we think happened to them. What we think needs to be done to prevent more damage.

What the hell are we doing?

We could start by casting a beady eye over how we, as parents, have been led to think about autism (or perhaps, how we have not been led to think at all).

Autism is a word used by doctors to describe behaviour and ability.

It is diagnosed by doctors with training in psychology, ratified by para-professionals with training in the modification of behavior.

At no point in the process of identification, diagnosis or mainstream management of autism is the physical health of the child, as it relates to this new diagnosis, examined.

Causation is not discussed (unless your kind of discussion involves ‘we don’t know’ or ‘it wasn’t that‘).

Despite the fact that we all get rightly huffy about ludicrous theories like ‘refrigerator mothers made these kids autistic’ we let the definition of autism in the very hands that held that theory gently for so long.

Despite the fact that we have no idea what’s causing the behaviours and abilities that define the condition our child has been diagnosed with, we are encouraged to put the child in the hands of people who actually do not care about that very fact.

Well, some of us strap on the sheepskin and carry on to Early Intervention. Some of us scratch our heads and proceed with caution.

The rest of us, an increasing pack of us, start researching. We do it the way we are all taught to research – go broad and understand as much as you can, make a specific plan, enact and continuously evaluate the plan, fall asleep at 3am, get up and do it all again.

With a few variations, this is what we learn.

There are many predicted roads to the future, each driven by their own philosophy and their own version of science.

The highly evaluated roads (the ones that reinforce the status quo, and aim to manage the outward expressions of ‘autism’ – speech and language deficits, behaviour challenges, restricted interests) do not question the causes of those expressions.

These are the therapies that every family is told will change their child’s trajectory – speech, OT, PT, behavioural therapy. They undoubtedly help some children to live a calmer and more functional life. Extra emphasis on the some and on the nonhealth, pro-function related outcomes.

The roads that address causation are under researched and inadequately documented.

When they are properly researched they are ignored, buried or pilloried by those whose philosophies they challenge.

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in my opinion

“parents who see their child mysteriously change wonder

These are the biomedical, integrative, nutrition – health related medical strategies.

These are the ones that examine why the things we call ‘autism’ happen and what we can do to treat those.

In a culture of evidence based medicine, are anyone else’s spidey senses prickling that we are actively encouraged to favour the non-medical strategies. We are constantly bludgeoned over the head with ‘the science’ and yet we are not publicly acknowledging the evaluation of the science of autism at all.

What’s up with that?

When mainstream opinion and policy makers discuss autism, they are describing outcomes as though they are symptoms, behaviours as though they are conditions and interpretations as though they were facts. There is little acceptance of a biological basis to autism. There is no awareness of the health status of the average child with autism.

Why? It could be because the stakes behind establishing those things as a matter of public health record are too high.

The change required to attempt prevention strategies based on the hard learned understandings of hundreds of thousands of thinking autism parents is too expensive, too wide ranging, too hard for health officials to enact.

So, we continue to allow a condition that is disabling our children at a rate of knots to be poorly described and treated as a mental health condition, to be managed. We describe it by how it feels, not by how it is.

Worse, we leave its treatment in the hands of those who simply accept, and do not question, its existence.

We may as well go and sit in the refrigerator and make nice cups of (cold) tea for each other.

When change is unwieldy and expensive, it doesn’t seem like a coincidence to me that the powers that be choose the passive, self managing, just accept it and be quiet road.

To them, I’m guessing it seems like a cheaper option, a safer option and an option that ultimately asks nothing of them.

In this non-thinking autism state, nations may not question, but people do. Parents who see their child mysteriously change, wonder why.

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in my opinion

why” People whose children lose capacity after routine medical recommendations, don’t believe that should have happened.

Families crippled by the financial and emotional cost of seeking appropriate medical care for their child who has been defined as not having a medical condition, are oddly perplexed about why this occurred in the first place.

The system, such as it is, generally chooses to attach to the feelings behind these parental questions, and ignore the thinking. After all, there’s no place for emotion in science, right? It’s a persuasive argument, that shifts many of us back into the sheep flock while we lick our emotional wounds. But, if you are a newbie in the field, know that if the sheepskin coat looks like it might smell bad, there are many in your circumstances who have acknowledged their feelings and transformed them, along with rigorous research, into advocacy and action.

If public health officials charged with managing autism, knew what we (as a society) were dealing with and accepted the reality of what we (as a society) have caused, then we might have a fighting chance at both healing and preventing the

broad base of medical conditions that we (as a society) choose to call ‘autism’.

Healthy kids don’t stop speaking for no reason. Healthy kids don’t bite themselves and others. Healthy kids don’t covet pieces of string and more to the point their parents are not encouraged to view them as cutting edge contemporary artists when they do.

Oddly enough, neither do children choose to not control their bowels, have seizures, compromise their own immune systems or react violently to environmental toxins and compromised foodstuffs.

The medical fraternity isn’t dealing with much very well, from what we can see.

They are under stress from all sides – financial, logistical, technological. I can only imagine the fact that we have handed autism to those who manage the outside and ignore the cause, is somewhat of a relief to them. The previous generation of autism parents who appeared to accept the the futility of questioning the condition must have been a massive relief. The fact that these accepting parents are rapidly dropping in numbers and being replaced by angry, intellectually rigorous, politically organised autism parents must be a source of gastrointestinal upset for them. Lucky they have a drug for that, right?

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in my opinion If you join the aforementioned grumpy ones, know there is one thing and one thing only unifying us – the need for change. If we want answers, we have to ask questions, even if the questions are large and confronting, even if the answers don’t come easily or quickly.

short term fix. The promises of the brochures and the programs do not heal the condition, they manage it, at best.

While we treat it from the outside in, we are ignoring the elephant (the herd of elephants) in the room – something is causing it and there is no consensus on what – lots of workable theories, but no consensus.

If you don’t want answers now, you will as your child ages and the strategies you have been offered have likely not magicked the challenges away.

That is a shaky shaky foundation for intervention that is so enthusiastically endorsed by the mainstream.

The acronyms and the obfuscation of the condition and the medications do not heal the condition, they are a sometimes useful

You might not want to think about that right

Billy and mum Valerie

Click on the picture of Valerie’s book The Autism Experience: International Perspectives on Autism Parenting to buy from Amazon

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The Canary in the Coal mine

#

Alyssa!Aleksanian

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Have(you(been(to(an(airport(lately?( Have#you#no:ced#the#television#screens#on# mass,#with#bright#adverts#featuring#shiny# faced#models,#black#on#bright#ice#fonts,# clicking#over#every#few#seconds?# What#about#the#tracks#of#startling# fluorescent#lights#spaced#every#half#meter,# their#reflec:on#in#an#eternal#bounce#from# floor#to#ceiling#across#every#wall#and#counter# surface?# Have#your#ears#encompassed#the#beeping#at# the#bag#check,#the#ever=present#reversing# taxis#outside,#as#well#as#taking#in#the#growl# of#the#cappuccino#machine#and#the# squeaking#and#bashing#of#the#expensive# luggage#trollies#as#they#are#manhandled#into# the#crush#of#humanity#wai:ng#in#the#hall?

Have#you#seen#the#mass#movement#of#the# many#thousand#different#bodies,#clad#in#all# colours,#of#all#angles#seething#and#writhing,# wai:ng#in#snaked#queues,#accompanied#by#a# thousand#different#:mbre#voice=notes?

Add#in#the#simultaneous#conflic:ng# announcements#from#various#carriers#and# blanket#it#all#with#a#constant#stream#of#not= so=background#music,#light#years#from#any# symphonic#harmony.

Put#it#all#in#the#washing#machine#that#is#a# sensi:ve,#au:s:c#mind,#crank#it#to##rapid# spin#cycle#and#I#can#say#you#have#a#window# into#our#world.

When#children#are#asked#to#draw#their# happy#place,#their#‘ideal#world’,#they#draw# willowy#trees,#saucer=sized#flowers,#emerald# grass#and#sapphire#skies.#They#don't#draw# concrete#and#metal#and#too#loud,#chao:c# scenes.

We#hear#all#the#:me#“I!am!stressed...have! too!li/le!0me...need!a!holiday...!to!get!away! into!the!quiet...”

Why#then,#are#we#steam#barreling#toward,# cul:va:ng,#a#world#that#is#the#opposite#of# what#we#all#need?# Perhaps#we#need#to#listen#to#the#au:s:c# soul.!

Really!listen.!

Listen!rather#than#just#observe!(as#has#been# the#mistaken#route#of#the#past)!and#use#such# insights#of#overload#as#a#barometer#for# sanity.# Pull#back,#slow#down,#quieten.#Simplify.# We#allow#ourselves#to#be#dictated#to#by# those#few#percent#paid#to#make#it#all#bright,# flashy,#stand=out=above=all=the=rest.# Meanwhile#we#all#suffer#the#subtle#corrosive# effects#eroding#our#serenity#and#our#sanity.# Those#in#the#minority,#in#this#case:#the# sensi:ve#au:s:c#minds#of#this#world,#have#a# richness#to#teach#about#what#we#need#to# nourish(that(small,(quiet(voice(in(all(of(us.

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Diagnosed#at#39#with#ASD,#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#ar:cles#wriQen#from#the#'insiders# perspec:ve'#as#it#were,# are#far#more#accurate# and#helpful#to#carers#and# loved#ones# than# those#constructed#from#the# observa:on# of# researchers.# All# theses# children# with# ASD# are# now# growing# up,# becoming# adults.#Let's# ask# them# what# it# is# like# being#them!#What#a# mine#of# informa:on# to# draw# and# learn#from!”

She#holds#a#Masters# degree#in#Teaching,#as#well#as#a#BA#in#Conserva:on#of#Cultural#Materials# and# a#BA# in# Visual#Arts# (yes=# like# most#with# ASD# it#has# taken# me# a#while# to# figure#out#what# employment#worked#for#me!).#You#can#see#more#of#Alyssa’s#art#at#alyssa.aleksanian.com

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THE AUTISM WORLD NEEDS

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

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Naming Ourselves A Mother & Daughter Poem

by Maria and Athena Iliou

Athena, you have Autism, a beautiful Gift You named it Autism, she said…

So I wondered how A label affects The way we think About disabilities and gifts How much more Would you say My sweet daughter If only you could Mommy, there’s Asperger’s Across the street…

She knows, I thought She made the connection Across the street Is where we hold our Support groups So I realized, again It became obvious How little we know about Autism Hopefully one day My precious Athena Others can learn From you...perhaps God Shines through you More brightly than The rest of us Autism World Magazine - 89

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Autism W rld

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