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Issue 24 / February / March 2015 essential reading for those who care

S EE FR S UB IP CR O TI N

Autism W rld Magazine

Autism in our Home

Need some head space? Unsung heroes Autism World Magazine - 1

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Autism W rld Welcome to the online version of Autism World Magazine If you are downloading this on an iPhone or iPod use the “Open in iBooks” option. For all other PDF Reader, please refer to your specific instruction manual. Or better still try our FREE APP on your device. Pictures labelled “Click on picture to play video” will take you to the video or download the file for playing. Any problems, send us an email at contact

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CONTENTS February/March 2015

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AUTISM IN  OUR  HOME Erin  Rayner

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Meet Maximus  and  his  special   ‘sensory  space’

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ADULTS &  AUTISM Kim  Isaac-­‐Emery   Is  RDI  right  for  you? Robert’s  Remediation   Journey

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Publisher:

© Copyright 2015 MagsWest PO Box 99 Mosman Park WA 6912 info@magswest.com

Autism World Magazine is available digitally for iPad, iPhone, Android devices, PCs and Online. Subscribe free via: autismworldmagazine.com

Editor: Iain Croft

08 HOW ABOUT  THEM  APPLES  

68 SISTER ACT

A lovely  surprise

Lori DeMonia  

19 POWER DISRUPTION

74 UNSUNG HERO

Deb Flintoff

28 NEED SOME  HEAD  SPACE? Lily  Holland

Sub Editor: Heather Paterson Website: autismworldmagazine.com

Facebook: facebook.com/worldautism

Meet Robbie  ‘bubba’.

Front Cover: Maximus

78 OUR WORLD  -­‐  DENMARK Birgitte  Bjørn

38 GAPS DIET:  NUTS  &  SEEDS Jacinta  O’Connor

49 STARTING SCHOOL Catherine  Crestani  and  Diana  Wolf

74 STATEMENT OF POLICY AND DISCLAIMER

‘The views expressed in any articles included in this publication are not necessarily those of Autism World Magazine or the publishers MagsWest Pty. Ltd. Autism World Magazine and the publishers do not promote or recommend any specific therapy, treatment, institution or professional viewpoint. Please check with a doctor when changing any diet or major nutritional change.

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Editor’s Note Welcome to the second anniversary edition Autism World Magazine. It seems like only yesterday that we embarked upon this incredible journey with each other to share the inspiration and wisdom of those in the global autism community. Our aims and values have remained the same throughout. If a great idea or solution works well for one family, by sharing the information, it may guide, inspire or entertain others. As we publish the 24th edition of this amazing digital magazine I look back with pride on what we have achieved so far. Looking forward, the magazine will switch to bi-monthly with six issues planned for 2015. If you would like to contribute a personal story or article for publication - do please get in touch via email or facebook as listed below. Best wishes,

iain proudly poses with his handmade steel mailbox

Iain

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

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HOW ABOUT THEM APPLES? Some days  something  really  special  and  unexpected  happens.  

Last week  we  were  in  our  local  chemist  getting  asthma  medicine  for  my   sweet  nine-­‐year-­‐old  son  who  is  autistic.  He  was  unwell  with  a  lingering   cough.  He  loves  the  blue  Inner  Health  Plus  bug  on  display  in  the  chemist     and  always  plays  with  it  while  we  wait.  Last  week  he  wanted  to  "borrow"   it.  Being  unwell  and  less  able  to  cope  with  things  than  usual,  when  he   realised  he  couldn't  take  it  home,  he  became  extremely  distressed,  lying   on  the  Rloor  holding  the  toy  and  sobbing.  The  pharmacy  assistant  helped   me  to  calm  him  and  she  gently  convinced  him  to  swap  the  toy  for  an  Inner   Health  Plus  card.     Then  out  of  the  blue  a  week  later  I  received  a  phone  call  from  her,  to  say   that  she  had  obtained  two  of  the  toys  especially  for  my  boys,  from  the   Inner  Health  Plus  rep.   My  boys  were  thrilled  when  I  took  them  down  to  the  chemist  to  receive   these  toys,  and  I  am  so  thankful  for  the  kindness  and  understanding  this   lady  showed  to  my  son  in  a  moment  that  was  so  upsetting  for  him.   Understanding  and  acceptance  goes  such  a  long  way.

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“Understanding and acceptance goes such a long way� Autism World Magazine - 9

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AUTISM IN OUR HOME ERIN RAYNER

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My name  is  Erin  Rayner.  I  have  a  husband,  Darren,  and  three  children.   Olympia  my  youngest  child  she  is  22  months,  Alexander,  who  is  four-­‐ years-­‐old,  was  recently  diagnosed  with  autism  (Asperger’s  on  the  old   scale)  and  Maximus  (pictured).    Maximus  is  Rive-­‐years-­‐old  and  has   severe  autism.  We  live  in  a  small  town  in  Queensland,  Australia,  after   moving  from  the  city  to  help  keep  Maximus  safe.  It  was  a  tough   decision  we  as  a  family  had  to  make,  however  it  was  the  only  option   we  had.

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Maximus becomes  overwhelmed  by   different  things  and  can  have  days  of   no  speech.   We  think  ourselves  very  lucky  that   he  can  talk  there  are  many  on  the   spectrum  who  never  do  not. On  the  days  his  speech  suffers  it   usually  is  because  of  stresses  out  of   his  control.  

For Maximus,  too  much  noise,  the   wrong  kind  of  touch,  to  many  things   happening  at  once,    changes  to   routine,  smells  and  tastes  can  all   send  him  into  a  state  of  Right  or  Rlight. Sadly,  for  Maximus,  this  often  is   displayed  in  violent  outburst.  These   meltdowns  look  much  like  your   average  tantrum  on  a  good  day,  and   on  a  bad  day  result  in  self  harm  or   harm  to  others,  the  bandage  on  his   arm  is  the  result  of  a  bad  day.

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It is important he is let alone to calm down The World  is  Overwhelming  for   Maximus,  so  we  set  up  a  ‘sensory   space’  for  him.  

It has  taken  a  long  time  for  us  as   parents,  along  with  his  therapists,  to   Rind  what  works  for  him.

We do  not  have  a  spare  room  or  a   large  space  so  have  converted  the   main  wardrobe  into  this  space.  It  is   dark,  has  small  Ridget  toys,  and   Rlashing  lights  to  play  with.  

As he  is  getting  older  is  slowly   starting  to  Rind  his  own  calming   techniques  if  given  the  option  to  Rind   them  himself,  and  he  is  not   overwhelmed  before  he  has  a  chance   to  Rind  his  tools.

Maximus likes  to  take  his  iPad  in   there  to  calm  down  when  there  is  too   much  happening  for  him. It  is  important  he  is  let  alone  while  in   this  space  or  a  meltdown  will  occur.   His  weighted  blanket  is  a  wonderful   calming  tool  for  him  as  well.   Maximus  is  a  ‘sensory  seeker’  in   some  ways,  however  in  others  he  is  a   ‘sensory  avoider’.

This is  what  we  have  been  working   on  since  he  was  two-­‐  years-­‐old   (before  diagnosis  of  autism,  we  knew   he  had  sensory  processing  disorder).   This,  we  hope,  will  help  him  cope   when  he  becomes  an  adult  with   autism.

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“we set  up  a  ‘sensory  space’  for  him”

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Maximus like  many  on  the  Autism   Spectrum  likes  to  escape. He  has  no  sense  of  danger  and   wanders  a  lot.  To  try  to  stop  or  at   least  slow  this  from  happening,   Darren  and  I  have  put  in  many   security  measures.  

We carry  the  keys  on  us  at  all  times   so  Maximus  can  not  get  to  them  and   escape.   Unfortunately  this  has  not  stopped   him,  as  he  will  climb  or  undo  screws   with  his  bare  hands  so  we  have  to   constantly  check  that  the  hinges  are   secure.

The fences  are  double  battened  (as   pictured  above)  the  gates  are   chained  locked,  and  the  doors  and   windows  are  also  locked.

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Maximus reads  his  visual  schedule,  this  helps   him  know  what  is  next,  as  he  completes  a  task,   the  task  is  removed.   This  helps  him  know  what  is  happening  next. We  also  use  a  visual  timer  (not  in  the   photograph  as  it  up  out  of  reach  so  he  cant   change  how  much  time  is  left)  This  helps  give   him  structure  and  reduces  his  anxiety  about   what  is  happening.

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Maximus loves  people  and  especially  loves   playing  with  his  little  sister.  

Each person  (child  or  an  adult)  is  affected  in  different  ways  and  to   different  severities.     All  our  children  our  special. I  am  passionate  about  reminding  those  outside  the  autism  community,   who  sees  a  child  ‘old  enough  to  know  better’,  to  stop  and  think.    They   may  have  an  invisible  disability  and  not  be  able  to  control  themselves. Erin.              www.facebook.com/RaynerPhotography

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DOWNLOAD OUR FREE APP TO SUBSCRIBE FREE TO AUTISM WORLD MAGAZINE FOR ALL MOBILE DEVICES AND TABLETS

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Puberty Blues with Deb Flintoff

Deb Flintoff is a passionate advocate for children on the autistic spectrum and their families. Deb’s extensive personal experience, with son Josh and knowledge of systemic procedures and policies, has allowed her to positively engage and empower other families to navigate through their daily lives and plan for the future.

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Power Disruption Deb Flintoff

We live  in  Perth,  Western  Australia  and  last  month  Perth   sweltered  through  one  of  it's  hottest  January  days  on  record. Temperature  rose  to  44.4  degrees  celcius,  111.92  degrees   fahrenheit. As  luck  would  have  it,   our  power  went  out.   To  be  fair,  the  whole   suburb  lost  power,  but   to  my  18-­‐year-­‐old  son   Josh,  all  that  mattered   was  his  house,  his   world.....what  he  was   doing  at  the  time. In  his  mind,  it  was  all   about  the  abrupt   disruption  to  his   afternoon.  Not   rationalising,   reasoning  or   perspective.

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My priority,  what  I  needed  to  do,   was  keep  Josh  cool  and  hydrated,   work  with  his  anxieties  to  keep   him  calm,  redirect  his  focus  and   ensure  he  stayed  out  of  his   bedroom  -­‐  his  sanctuary,  his   place  of  calm. To  put  this  in  perspective  for  me,   the  power  went  out  and  yes,  it   was  incredibly  uncomfortable   without  the  air  conditioners.  

However, I  knew  the  situation   was  temporary,  the  power  would   eventually  return  and  we  would   manage  just  like  everyone  else. For  Josh,  it  was  a  vastly  different   story  -­‐  his  perspective  is  deRined   by  the  here  and  now,  what  he  can   and  can  not  do.  

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“my role as "disaster recovery" officer kicked in.” His literal  mindset  does  not   allow  him  to  relate  to  or   empathise  with  people  he  does   not  know,  in  a  situation  he  is  not   familiar,  or  a  period  of  time  on   which  he  can  not  reRlect.     That  It  is  all  way  too  abstract. What  matters  to  him  is  simple,   it's  concrete,  it's  tangible,  it  is   the  moment.   It  is  the  TV,  DVD,  DS,  Laptop  or   iPad  that  he  is  unable  to  use  due   to  lack  of  power,  in  his  bedroom.   The  very  place  he  would  reside   in  order  to  process  is  thoughts   and  restore  his  sense  of  calm.   Yes,  reading  was  an  option,  Josh   loves  to  read  his  books  and  play   with  the  train  track  on  his   bedroom  Rloor,  but  as  the   temperature  steadily  rose   (minus  the  air-­‐con),  his  room   was  too  unbearable  to  remain  in,   especially  with  the  door  closed.

So, as  calmly  and  patiently  as   possible,  my  role  as  "disaster   recovery"  ofRicer  kicked  in.   The  next  few  hours  were  just   another  period  of  time  in  our   ever  evolving  world  of   experiences,  challenges  and   learning  moments.   We  had  endured  power  outages   before,  but  not  quite  at  these   temperatures. Under  great  duress,  we  managed   to  keep  Josh's  door  open,  ensure   he  remained  well  hydrated  and   keep  him  cool  with  a  wet  towel.   All  the  while,  allowing  Josh  to   vent  and  de-­‐stress  with  the   power  of  repetition  (a  coping   strategy  which  comes  to  him  so   naturally),  in  this  instance  it  was   a  "Fireman  Sam"  episode  titled   'Pontypandy  Heatwave'.  

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Josh meeting a member of local fire brigade

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“it broke my heart when the power broke”

Later that  evening,  the  power   returned.   After  a  (not  so  nice  for  Josh)  cold   dinner,  shower,  change  of   clothes  and  most  importantly,   cooler  temperatures  and  air-­‐ conditioning,  Josh  and  I  watched   some  TV.   What  happened  next  blew  me   away  (for  want  of  a  better  way   to  express  my  reaction). Completely  unprompted,  Josh   said,  "it  broke  my  heart  when   the  power  broke".   WOW  -­‐  on  one  hand,  Josh   expressed  his  feelings  so  well,  so   succinctly  and  well,  so   powerfully,  this  was  an  exciting   moment  of  self  expression  and   awareness.

On the  other  hand,  it  broke  my   heart,  as  his  parent,  to  put   myself  in  his  position,  his  reality,   his  world  and  really  understand   the  magnitude  of  what  the  last   few  hours  meant  to  him.   A  world  without  his  few   creature  comforts  in  his  own   private  sanctuary,  is  a  world  not   whole.   We  hugged  a  "big,   understanding,  warm  and   apologetic"  hug.  Josh  said  "Sorry".   To  which  I  replied,  "Josh,  you  are   so  sweet,  you  have  nothing  to  be   sorry  for.   “It  is  not  your  fault  the  power   broke".

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Josh and Deb

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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 - 26

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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 - 27

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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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Need some Head SPACE?

by Lily Holland

Image courtesy: Daniel O'Toole, known as EARS. www.earstotheground.net Autism World Magazine - 29

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What does  it   take   to   make  us   realise  

I have   sung   this   tune   before,   more  

that our   children   need   us   to   take  

than once…   just   as  I’ve  started   a  few  

good care  of  ourselves?

sessions of   late   with   “I’m   sorry   if   I  

I ask   myself   this  question  constantly,  

sound like  I’m  nagging  but…”

wondering how   else   I   can   urge  

So –   I’m   sorry   to   sound   like   I’m  

clients to  look  after   their  own  health.  

nagging but…

It’s a   hard   one   –   I   totally   get   how   difRicult   it   is   to   think   of   ‘self’   when   needs   are   big   and   constant,   and   sometimes  many.  

I've had   one   client   diagnosed   with   adrenal   fatigue,   two   with   thyroid   issues,   one   with   high   pyroles   and   zinc  deRiciency...and  a  friend  (also  an  

It's counter-­‐intuitive.   We're   hard  

autism mum)   was  rushed  away  in  an  

wired to   attend   to   the   needs   of   our  

ambulance to  Rind  out  later  that  she's  

child Rirst,   worry   about   self   later.  

critically low  in  magnesium.

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caring for the carers

I Rirmly   believe  that  this  is  a  message  I  must  keep   repeating,  not  just  to  others   but  also  to  myself. I  did   not  pay  attention  to  the  warnings.  It  took   a  few  days  in  a  hospital  bed   to   make  me  realise   how  important  it   is  to  look   after  the  person  who  is  my  child's   main  Carer  -­‐  me.  I  had  three  days  at   St   Vincent's  hospital,  and  I'm  embarrassed   to  say  I  really  enjoyed  my  stay  -­‐  because  it  was  such  a  good  break.  

I slept  as   much  as   I  pleased,   I  watched  all  kinds   of   TV,   plenty  of   good  reading   on  the   side  table,  and  a  nurse  popping  her  head   in  regularly  to  see  if  I  needed   anything...and  I  was  a  little  high  on  drugs. I  was  so  exhausted  that  my  hospital  stay  was  a  treat.  Tragic.

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caring for the carers

So maybe   that’s   what   it   takes?   Getting  sick?   Is  there  no   way  to  save  anyone  from   going  down  that   track?  These  days  I  

“Yes it's hard.”

time away  by  myself  regularly  and   it   really  is   a  treat;   there's  no  nurse  (or   drugs)   but   it's  a  hotel   room  to  myself   with   room   service,   movies,   and   the   freedom   to  do   whatever   I   please  for  

'So how   would   it   be   if   you   did   that  

about 48   hours.   Head   space.   Heart  

regularly so  you  could   feel   that   way  

space. Space.  

more often?'   I   asked   her.   She  

I can't   say  it's  easy  getting   away...the  

chuckled and  said  'hard!'

a m o u n t o f   p r e p a r a t i o n   h a s  

Yes it's   hard.   But   it's   a   bit   like  

sometimes made   me   wonder   if   it's  

exercising...you force   yourself   and   it  

even worth   it.   But   of   course   it   is  

becomes routine,   and   then   you  

worth it.  Every.  Single.  Time.

realise it  makes  you  feel  better.  

A client   mentioned   to   me   that   she  

Everything works   better   when   you  

enjoyed some   head   space   recently  

take care  of  yourself.   And  you  keep   it  

when she   took   a   day   attending   to   a  

up because  once  you've  slipped  back  

different chore.  It   wasn't   really   even  

into old  habits  a  couple  of  times  you  

a real  break,  but  just   the   fact   that  she  

realise that   everything   feels   better  

was doing   something   away   from  

when you  make  it  a  habit   to  take  care  

home felt  like  head  space.  

of yourself.   (And   when   you   don't...it   doesn't!) Autism World Magazine - 32

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caring for the carers

It has   to   become   a   discipline...you  

Your children   need   you   to   be   well,  

need to  force  yourself  at  Rirst.

and it's   one   of   the   best   things   you  

I will   keep   nagging   my   clients   regardless   of   the   glazed   look   that   comes   over   them,   because   I   wish   I  

can do  for  them.   If  you  don't  put  the   mask   on  yourself  Rirst,   who  will   help   the  children?"

had met  me  about  7  years  ago.  And  I  

I know  I  sound  like  I’m   nagging  you…

will keep   Rinding   different   ways   to  

but its  for   you  and   your  child’s  good,  

w r i t e a n d   s a y   " t a k e   c a r e   o f  

and that’s  my  job.

yourselves please,   in   every   little  and   in  any  way  you  can.   Autism World Magazine - 33

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caring for the carers

I've listed  these  before,  but  in  the  spirit  of  nagging  here  they  are  again… Strategies  for  Self-­‐Care:   • Compartmentalise  (a  very  effective  CBT  technique  which  can  help   deal  with  overwhelm).  Try  to  do  this  literally  as  well  as  emotionally…   if  you  have  one  of  those  bulging  folders  full  of  reports  and  information   that  we  all  start  out  with,  get  yourself  a  Riling  box  and  sort  the   paperwork.  You’ll  feel  much  less  overwhelmed.  Do  the  same   emotionally;  set  yourself  one  or  two  tasks  at  a  time  rather  than   allowing  the  big  to-­‐do-­‐list-­‐of-­‐everything  to  weigh  your  mind  each  day.   Compartmentalising  into  sensible,  daily  to-­‐do  lists  has  many  beneRits. •

Take breaks  –  small  breaks,  big  breaks,  any  breaks  -­‐  as  often  and  as   regularly  as  you  can  (sometimes  just  doing  the  groceries  on  your  own   can  count  as  a  break)

Learn to  say  no  when  your  plate  is  already  full

Learn to  take  things  off  your  plate  when  you  can

Learn to  be  kind  to  yourself

Accept help  when  it  is  offered  (hard  for  some  of  us)

Try to  eat  nourishing  foods  that  give  you  energy

Try to  exercise  or  stretch  when  you  can

Try to  objectify  your  situation  to  gain  some  perspective

Share your  emotions  with  someone  –  and  if  you  are  really   struggling  look  for  support;  some  people  beneRit  from  support  groups,   some  people  prefer  one-­‐on-­‐one  counselling,  and  some  people  get  a  lot   out  of  meeting  other  parents  informally  at  special  play  groups. Autism World Magazine - 34

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caring for the carers

AND remember  above  all  else  PLEASE  DO  NOT  SUFFER  WITH   STRESS  ALONE.   Love  Lily  xx

Lily Holland Counsellor/ Psychotherapist. Randwick and Parramatta, NSW, Australia. She is also available for telephone or Skype/FaceTime appointments. Contact lily@lilyholland.com

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eat play Learn

Essential thinking on food, education and play from the most respected minds across the Autism world.

Autism World Magazine - 37

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Nuts and Seeds on the GAPS Protocol

with Jacinta O’Connor

Jacinta O’Connor is a Nutritionist * Naturopath * Certified GAPS Practitioner * MINDD Practitioner * Additive Alert Presenter

GAPS – Gut and Psychology Syndrome & Gut and Physiological Syndrome) ‘GAPS TM is the registered trademark of Dr Natasha Campbell-McBride

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Exploring nuts and seeds

The GAPS  Protocol  calls  for  a  six   week  dairy  free  period.  This  is  a   great  time  to  explore  nut  and  seed   milks  and  make  some  delicious   savoury  and  sweet  treats  with  the   leftover  nut  or  seed  pulp.  

Firstly let’s  look  at  what  needs  to  be   done  to  prepare  nuts  and  seeds  on   the  GAPS  Protocol.   Nuts  and  seeds  need  to  be  soaked  to   assist  in  reducing  the  anti-­‐nutrients   contained  within  the  nuts  and  seeds,   which  can  make  them  difRicult  to   digest  and  absorb.

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Soaking nuts and seeds

Place 4  cups  of  raw  nuts  or  seeds  in  a   large  jar  or  glass  bowl.  Cover  with   warm  Riltered  water.  Gently  stir  in   some  sea  salt.  Soak  for  7  hours.   Strain,  rinse  and  place  in  a   dehydrator  or  oven  at  no  more  than   50  C  for  24  hours,  or  until  crisp.   Store  all  nuts  and  seeds  in  an  airtight   container  in  the  fridge  or  freezer  for   up  to  6  months.

Note: Cashews  are  treated  a  little   differently  as  they  are  not  really  raw.   They  have  been  heated  while  still  in   their  shell  to  neutralise  a  toxic  oil   called  cardol.  Follow  the  regular   soaking  instructions  then  spread  them   out  on  baking  paper.  Roast  in  the  oven   at  100C  –  120C  for  12  hours  for   optimal  Dlavour  and  crunch.

Salt measurements  for  soaking  nuts  and  seeds   (based  on  4  cups  of  nuts  or  seeds)

Pecans Walnuts Peanuts Pine nuts Almonds

2 tsp 2 tsp 1 Tbsp 1 Tbsp 1 Tbsp

Hazelnuts Cashews Pumpkin seeds Sunflower seeds Macadamia nuts

1 Tbsp 1 Tbsp 2 Tbsp 2 Tbsp 1 Tbsp

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Pouring nut milk mixture into the nut milk bag Dripping cashew milk through the nut milk bag

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Nut Milk

In a  blender,  Thermo  or  Vitamix,   place  1  cup  of  crispy  nuts  or  seeds   (already  soaked  and  dehydrated)   and  2  -­‐  4  cups  of  fresh  Riltered  water.   2  cups  will  make  a  ‘creamy’  nut  milk.   Four  cups  of  Riltered  water  will  make   a  more  watery  nut  milk.  Blend  for  30   seconds  to  a  minute.  Strain  the  milk   into  a  jug  through  a  sieve  or  nut  milk   bag.  Gently  press  down  on  the  solids   or  squeeze  the  bag  to  release  all  of   the  milk.  Add  spices  or  sweeteners  as   you  wish.  Store  in  the  fridge  for  2  to   3  days.   Adding  in  1-­‐  2  dates  or  some  raisons   or  sultanas  into  the  nut  and  water   mix,  before  you  blend  it,  will  make   deliciously  sweet  nut  milk.  

Alternatively you  can  add  honey  to   taste. Spices  such  as  cardamom,  all  spice   and  cinnamon  can  also  be  added.     What  Do  I  Do  With  the  Leftover   Nut  or  Seed  Pulp? Sweetened  pulp  can  be  used  for   macaroons  and  trufRles.  Plain  pulp   can  be  used  as  a  base  for  dips.   You  can  also  freeze  it  to  use  at  a  later   time.   Below  are  two  nut  pulp  recipes,  one   savoury  and  one  sweet.

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Nut Pulp Hummus

1 -­‐  2  cups  of  nut  or  seed  pulp 3  cloves  garlic Juice  of  1  lemon 6  Tbsp  raw  tahini 2  tsp  ground  cumin 1  Tbsp  olive  oil

Place all  of  the  ingredients  in  a  food   processor,  and  blend  for  1  minute  or   until  smooth.  Remove  to  a  bowl,  and   drizzle  with  olive  oil  and  a  sprinkle  of   paprika.  

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Chocolate Truffles

1 ¼  cups  of  nut  or  seed  pulp ¼  cup  honey 1  tsp  cinnamon   1  tsp  vanilla  extract  or  scrapings  of  2   vanilla  beans Pinch  of  sea  salt 1  cup  dried  shredded  coconut ¼  cup  cacao  powder  with  a  little   extra  for  rolling  the  trufRles

Mix all  of  the  ingredients  together  in   a  food  processor,  adding  a  little   Riltered  water  as  needed  if  the  dough   is  too  dry.  Place  the  dough  in  the   fridge  for  about  10  minutes  to  make   it  more  workable.  Remove  from  the   fridge  and  use  a  spoon  to  break  off   about  2cm  diameter  balls.  Roll  the   balls  between  your  palms,  then  roll   in  extra  cacao  powder  and  place  on  a   plate.  Store  in  the  fridge.   Recipe  courtesy  of  The  Heal  Your  Gut  Cookbook   by  Hilary  Boynton.

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Stuck and Struggling to Introduce Nuts and Seeds??

People can  sometimes  Rind   themselves  ‘stuck’  on  Stage  Three  of   the  GAPS  Introduction  Protocol,   unable  to  successfully  introduce  nuts   or  seeds.    Most  nuts  are  quite  high  in   oxalates.   People  with  yeast  overgrowth  often   have  difRiculty  with  oxalates  in  foods   and  are  best  going  onto  a  low  oxalate   version  of  GAPS  to  begin  with.   Frequent  urination,  night  urination   in  adults,  and  bet-­‐wetting  in  children,   are  commonly  experienced.   Yeast  overgrowth  is  frequently  seen   in  people  who  have  a  high  level  of   heavy  metals,  such  as  mercury,  in   their  body.    

When yeast  and  heavy  metal  issues   have  been  addressed  nutritionally   and  supplementally,  oxalates  can  be   better  tolerated.  This  can  take  some   time.   Yeast  overgrowth  often  goes  hand  in   hand  with  parasites. When  people  are  having  difRiculty   bringing  in  nuts,  seeds,  fruits  and   honey,  parasites  can  often  be  part  of   the  picture.  This  is  particularly   evident  when  fats  are  not  well   tolerated.    Parasites  are  complex  to   address  and  there  is  not  a  ‘one  size   Rits  all’  strategy  to  take  care  of  them.  

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Always start with very small amounts

The GAPS  Nutritional  Protocol  will   assist  in  reducing  parasites.   Additional  work  is  required  to   remove  the  parasites  and  this  is  best   done  under  the  guidance  of  a   practitioner  who  is  familiar  with   anti-­‐parasitic  treatments,  including   dietary  interventions.  

Once the  yeast  and  parasitic  issues   are  under  control,  it  is  best  to   introduce  seeds  such  as  pumpkin  and   sunRlower  seeds  initially  as  they  are   low  in  oxalates.  Macadamias  and   pecans  are  considered  lower  in   oxalates  than  other  nuts.    Always   start  with  very  small  amounts  and   work  your  way  up.

Macadamia is a genus of four species of trees indigenous to Australia and constituting part of the plant family Proteaceae. They are native to north eastern New South Wales and central and south eastern Queensland. Wikipedia

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Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and Nedlands, Western Australia

www.gapsperth.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

Autism World Magazine - 47

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Starting School with Catherine Crestani and Diana Wolf

Star%ng school  or  going  back  to  school  can  be  difficult  for  a  child   with  au%sm  as  they  have  lost  their  rou%ne  throughout  the   holidays.   Wherever  you  are  across  the  world  prepara%on  and  prac%ce  can   help  prepare  your  child  for  the  new  school  year.  

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Here are  some  %ps  to  help  get  your  child  ready: If  possible  have  photos  of  the  school  (including   the  canteen  etc)  and  know  who  your  child’s   teacher  will  be.  This  will  help  familiarise  your   child  in  prepara%on  for  star%ng  school. Create  a  booklet  for  your  child’s  teacher  about   your  child’s  likes/dislikes,  sensory  preferences   and  what  to  do  if  your  child  has  a  meltdown.   Use  a  social  story  to  prepare  your  child  for  the   school  year.   You  can  buy  books  such  as  Anna  Tullemans  ‘I’m   Going  to  School’.  This  book  is  available  from   www.annatullemans.com/store/books   Have  a  calendar  to  countdown  the  days  un%l   school  starts.  This  is  also  great  during  school   term  so  your  child  knows  when  the  weekend  is   or  any  excursions  etc.

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Make sure  you  have  all  parts  of  your  child’s   uniform  and  they  are  worn  in  (e.g.  wash  the   new  shirt  a  few  %mes,  wear  in  the  shoes). Try  and  have  your  child  par%cipate  in  a  ready   for  school  group.   Prepare  your  child’s  school  bag  the  night  before   so  nothing  is  forgoOen.   Make  sure  their  lunch  boxes,  drink  boOles  and   food  are  easy  to  open.  Some%mes  a  trial  run  the   week  before  can  go  a  long  way. Prac%ce  the  school  run  for  over  anxious   children.

Catherine &  Diana

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Catherine Crestani and Diana Wolf are Principal Speech Pathologists at Nepean Speech and Language Services, in Penrith NSW, Australia. Diana has more than 21 years of experience and continues to thrive on learning new ways to provide intervention to children. Catherine’s passion is for early intervention, including supporting children with ASD.   www.nsls.com.au

AUTISM WORLD  MAGAZINE   DELIVERED  DIRECT  TO  YOUR   DEVICE Don’t  miss  out  CLICK  HERE   TO  SUBSCRIBE  FOR  FREE

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Autism W rld Magazine

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Kalparrin operates  a  variety  of  services  and  programs  to   provide  assistance  to  parents  and  children  in  need. Visitor  Lounge Where  families  of  children  with  disabilities  or  special  needs   can  talk  to  a  Family  Support  OfRicer,  browse  our  extensive   collection  of  pamphlets  and  resources,  meet  with  other   parents  or  just  relax  with  a  cup  of  tea  or  coffee. Information  and  Support Search  our  website  for  links  to  helpful  resources  or  talk  to  our   Family  Support  OfRicers  at  Kalparrin. Mothers  Weekends Held  twice  a  year  in  the  Metropolitan  area  and  twice  in   Regional  WA. Family  Events Kalparrin  holds  its  annual  inclusive  Family  Fun  Day  for   children  with  special  needs  and  their  families. Events  for  couples  and  other  family  members  are  organised  as   funds  permit. Parent  Link Helping  families  link  and  network  with  other  families  in   similar  situations.  Please  talk  to  our  Family  Support  OfRicer  for   more  information. Newsletter Kalparrin  Cares  is  published  4  times  a  year  and  contains  news,   member  stories  and  highlights  from  our  events  and  programs. E-­‐News Kalparrin  E-­‐News  is  a  weekly  electronic  bulletin  covering   events  and  information  of  interest  for  our  members  from  the   Disability  sector. Telephone:  08  9340  8094 FreeCall:  1800  066  413 Fax:  08  9380  6114 Email:  kalparrinwa@health.wa.gov.au Location Level  4,  Hay  Street  Building  (near  Hydrotherapy  Pool) Princess  Margaret  Hospital,  Subiaco,  Western  Australia  6008

Opening Hours:  8:30am  –  4:30pm,  Monday  –  Friday Autism World Magazine - 54

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IS RDI FOR YOU?

with Kim Isaac-Emery

Autism World Magazine - 55

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Adults and  Au*sm Robert’s  Remedia*on  Journey by Kim Isaac-Emery

Parents raising   children   diagnosed   on   the   Au2sm   Spectrum   can’t   help   but   wonder   and   worry   about   their   child's   future.   Ques2ons   such   as,  can   they  have  a  sa2sfying  level  of  independence,  maintain   a  fulfilling  job,  get  married  and  even  have  a  life  outside   of  Au2sm,   are  constantly  in  parents'  minds.    

Robert is  a  35  year  old  man  with   autism.   Diagnosed  at  age  three,  his  parents   tried  every  therapy  that  emerged   over  the  years,  but  saw  only   minimal  change.   By  the  age  of  twenty-­‐eight  Robert   had  learned  some  academic  skills   however  he  struggled  with  even  the   most  basic  of  daily  life  interactions.  

By that  time  Roberts  parents  were   feeling  very  frustrated  as  they  didn’t   feel  they  could  communicate  well   with  their  son  and  had  expressed  to   others  how  difRicult  it  was  to  be   around  him  -­‐  even  to  just  be  in  the   same  room  with  him!    Robert  was   unable  to  transition  from  almost   any  activity  without  becoming   hyper  focused  on  elements  of  the   situation  that  only  he  was   interested  in.  

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"Nurture your mind with great thoughts, for you will never go any higher than you think."   - Benjamin Disraeli  

Robert

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Sometimes these  hyper-­‐focused   communications  would  last  days,  as   he  was  unable  to  let  go  of  an   outcome  that  he  didn’t  like  or  want.   Any  time  he  was  asked  to  do   something,  he  would  protest.  They   were  unable  to  take  him  out  in  public   places  because  his  obsessive   communication  would  escalate  into   ‘tantrums’  and  his  social  and  self   awareness  were  so  poor.  He  was   home  all  day,  every  day.   Understanding  Robert His  parents  had  lost  hope  that  they   could  continue  to  care  for  their  son,   let  alone  teach  him  anything.    At  the   age  of  28,  Robert’s  and  his  family’s   lives  were  changed  when  they  found   Relationship  Development   Intervention  (RDI™).     RDI  is  a  fairly  new  approach  to  ASD   intervention  designed  to  help   develop  an  individual’s  capacity  for   Rlexible  thinking.     The  ‘RDI  model  is  based  upon  the   most  up  to  date  research  in  autism   and  human  development,  and  is  built   around  the  concept  that  the  human   mind  can  be  changed  through   external  stimuli  provided  by  trusted   caregivers,  and  thus  improve  the   affected  individual’s  prospects  for  a   better  quality  of  life.    

Their program  started  with  a  parent   education  component  during  which   Robert’s  parents  learned  what  the   true,  or  ‘core’  deRicits  of  autism  were,   and  how  those  were  inRluencing   Robert’s  behaviors.     This  proved  to  be  instrumental  in   helping  Roberts’  parent  understand   why  he  behaved  the  way  he  did.  In   particular,  they  learned  how  the   rigid  behaviors  Robert  exhibited   were  not  acts  of  resistance  to  their   parental  authority,  but  rather  a   response  to  the  profound  anxiety  he   felt  when  engaging  with  a  world  that   did  not  function  in  a  way  his  mind   could  grasp.     In  Robert’s  case,  he  was  unable  to   accept  particular  answers  to   questions  or  requests  that  weren’t  in   line  with  what  he  expected,  what  he   wanted,  or  if  there  were  boundaries   set  on  his  behaviors  (from  his   parents  or  anyone).  He  was   perpetually  Rixated  on  his  own   internal  scripts  and  desired   outcomes,  and  was  unable  to  take   any  perspective  other  than  his  own.     Below  are  some  examples  of  some   typical  ‘conversations’  he  would   have.  These  types  of  conversation   would  go  on  and  on  for  sometimes   hours-­‐  with  him  repeating  the  same   questions. Autism World Magazine - 58

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Example (1) Robert:  Why  does  “Smith’s”  Pizza  not   serve  ice-­‐cream? Partner:  I  don’t  know…   Restaurant  and  business  owners   choose  what  they  want  to  serve.   They  chose  not  to.  Each  owner  has   choices  when  they  create  their   business  and  they  decide  what  they   want  to  do.   Robert:  But  I  like  ice-­‐cream  so  why   don’t  they  have  it?   Partner:  We  can  get  it  somewhere   else.   Robert:  I  understand  we  can  get  it   some  somewhere  else,  but  I  want  to   know  why  they  don’t  have  it  because   I  like  it.  I  don't  know  why  they   wouldn’t  have  it.

The resulting  anxiety  compels  the   individual  to  rely  upon  predictable,   static  rules  and  schedules  in  order  to   function.   Robert  was  also  hyper  focused  on   watching  people’s  mouths  when  they   spoke  and  was  therefore  unable  to   understand  any  non-­‐verbal   communication.   He  would  only  accept  a  person   answering  questions  with  a  yes  or   no,  and  when  he  didn’t  get  the   answers  that  he  wanted,  he  would   become  very  frustrated,  and  talk   increasingly  faster  as  he  repeated   himself.   This  escalated  frustration  sometimes   ended  with  him  banging  his  head,   yelling,  and  lashing  out.  

RDI taught  Robert’s  parents  that   rigid  thinking  is  not  a  direct   characteristic  of  autism,  but  rather  a   response  to  the  great  deal  of   difRiculty  autistic  minds  have  in   coping  with  novel  circumstances  or   unpredictability.      

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Example (2)   Robert:  Do  you  want  to  go  to  the   park  with  me?   Partner:  Sure. Robert:  So  do  you  want  to  go  to  the   park  with  me?   Partner:  I  just  told  you  yes. Robert:  But  you  didn’t  say  yes,  you   said  sure.  Why  is  it  that  you  didn’t   say  yes?   Robert’s  parents  learned  that  the   reason  for  this  is  that  Robert’s  mind   does  not  inherently  understand  or   see  the  value  in  non-­‐verbal  channels   of  communication  –  a  trait  which   evolves  naturally  in  neurotypical   children  –  and  so  he  placed  an  over   emphasis  upon  the  words  people   spoke.     Since  he  was  so  reliant  upon  speech,   concise  language  was  critical  to  his   understanding  others.    Thus,  his   attention  was  almost  always  focused   on  people’s  mouths  and  equally   oblivious  to  their  gestures,  vocal   intonations  or  facial  expressions.  

Sometimes Robert  would  ask  his   mother  a  question  and  she  would   nod  their  head  yes  in  response.   He  would  stare  at  her  mouth  and  say,   “You  didn’t  answer  me.”   Because  she  hadn’t  verbalized  a  ‘yes’,   and  he  did  not  understand  that   nonverbal  communication  was  a   critical  sub  component  of   communication,  he  thought  she  was   ignoring  him.   At  one  point,  his  mother  explained  to   him,  “I  am  showing  you  my  answer   with  my  head.”   He  would  step  back,  looking   confused.   She  told  him  that  a  head  nod  means   yes.  Even  though  he  learned  this,  he   was  unable  to  ‘remember’  this   during  conversations  and  remained   hyper  focused  on  mouths.   He  would  stare  at  his  mother’s   mouth  waiting  for  a  verbal  answer,   and  if  she  walked  away,  he  would   follow  her  relentlessly  until  she  said   ‘yes’.  

Autism World Magazine - 60

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Robert and Kim

Starting Point:   Establishing  a  guiding  relationship. Robert  had  never  been  able  to  form  a   solid  guide/participant  relationship   with  his  parents,  the  foundation  for   all  parental  teaching,  due  to  his   deRicits.  

He had  great  difRiculty  with  being  an   apprentice  (learning  from  others),   dynamic  /  Rlexible  thinking,  social   referencing,  experience  sharing   communication,  and  emotional   regulation.    

Autism World Magazine - 61

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“objectives were kept simple” In order  to  go  back  and  redo  that   relationship,  their  consultant  had   Robert’s  parents  focus  on  adjusting   their  communication  style  to  model   for  Robert  to  set  interactive   boundaries.   The  idea  was  for  them  to  learn   techniques  to  help  create  the  space   for  Robert  to  be  an  apprentice  and  to   establish  roles.   There  was  a  focus  on  slowing  down   the  pace  of  their  interaction,  turn   taking,  and  moving  on  physically  /   not  responding  when  Robert  would   become  stuck  on  a  particular  item  or   statement.   When  Robert  was  stuck,  he  was   unable  to  ‘move  and  talk’  at  the  same   time.  

So when  talking,  he  would  stand  in   whatever  spot  he  was  (for  a  long   time  until  he  got  the  answer  he  was   expected).  They  with  the  interactions   halted  or  escalated.   A  feedback  cycle  that  was   unproductive  and  frustrating   developed  over  the  years  as  a  result   of  Robert’s  core  deRicits  and  his   parents  reacting  the  only  way  they   know  how.   As  Robert’s  parents  were  quite   overwhelmed  and  given  that  Robert   had  demonstrated  clear  neuro-­‐ processing  difRiculties,  it  was   important  that  objectives  assigned   were  kept  simple,  broken  down  and   administered  in  a  step  by  step   manner.  

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Below are  a  few  examples  of  areas  that  they  worked  on.   Communication Robert’s  parents  were  instructed  to  increase  their  use  experience   sharing  communication  and  reduce  their  directions  and   instructional  communication.  The  idea  was  to  help  them  break  the   static  communication  pattern  that  they  were  in,  to  model  experience   sharing  communication  for  Robert,  and  re-­‐set  the  tone  of  the   relationship  to  that  of  a  collaborative  partnership.    These  are  some   examples  of  instrumental  vs.  experience  sharing  communication: Instrumental  communication  VS..  Experience  sharing “Go  get  the  scissors.”        VS.  “This  bag  looks  like  it’s  sealed.  We  may   need  to  cut  it.” “Did  you  like  the  movie?”  VS.  “My  favorite  part  of  the  movie  was   ……” “Take  your  wallet  and  cell  phone  before  you  leave.”  VS.  “It’s   important  think  about  what  you  may  need  before  leaving.” Perspective  taking  -­‐  A  Rirst  step Robert  was  not  noticing  the  world  around  him.  He  didn’t  realize  that   observing  /  noticing  was  of  value  in  his  life.  So  much  so  to  where  in   public,  he  would  literally  walk  into  people.  As  a  basic  starting  point,   mom  and  dad  would  go  out  with  Robert  and  take  turns  sharing  what   they  ‘saw’.    “I  see  a  ______.  “    There  was  no  expectation  or   performance  component.  Each  person  could  share  whatever  they   noticed,  as  a  starting  point  to  realizing  that  there  are  things  to   notice.  

Autism World Magazine - 63

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Nonverbal communication-­‐  A  Uirst  step Robert  had  no  idea  that  nonverbal  communication  was  part  of   communication.  He  didn’t  ‘look’  for  it,  as  he  would  focus  on   watching  the  mouth  of  who  was  talking  to  him  and  focus  solely  on   the  verbal  communication  channel.  As  a  starting  point,  mom  and   dad  would  ‘answer’  his  yes  /  no  questions  with  nonverbal  head  nod   or  shake  only.   Robert  has  progressed  by  leaps  and  bounds  from  where  he  was  at   28.  He  is  now  able  to  engage  in  short  reciprocal  conversations  with   his  parents  and  others,  is  able  to  transition  with  minimal  (to  zero)   difRiculty,  he  is  observing  his  surroundings,  and  is  sharing  more  of   what  he  sees,  thinks  and  feels  much  more  consistently.  Not  only  can   he  now  go  places,  he  also  takes  college  classes  at  the  local   community  college,  attends  social  groups,  Special  Olympics,  and  can   go  to  movies,  plays,  and  sporting  events  with  his  family  without  any   issues.  He  no  longer  bangs  his  head  or  lashes  out.  His  is  now  able  to   learn  from  his  parents  and  continues  to  learn  every  day!   Today,  a  conversation  looks  like  this:   Robert:  I  really  liked  that  movie.   Partner:  Me  too!   Robert:  What  did  you  like  about  it?   Partner:  I  liked  the  comedy.  I  thought  it  was  really  funny.   Robert:  Me  too.  I  thought  the  laughing  horse  was  funny.  Do  you   think  that  we  maybe  later  get  some  ice  cream?   Partner:  Sure!   Robert:  Okay.  

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After a  great  deal  of  patience,   learning,  and  dedicated  practice,   Robert’s  parents  have  learned  to   guide  him,  to  learn  to  learn  from   them  and  better  understand  the   world  around  them.   There  is  still  a  lot  of  room  for  Robert   to  grow  and  develop.  The  exciting   thing  is  that  he  has  come  so  far  and   has  been  able  to  learn  so  much  in  his   adult  years.   In  fact,  Robert’s  parents  report  that   he  has  made  more  progress  in  the   time  that  they  did  RDI  than  he  had   his  entire  childhood  and  early   adulthood!   Their  family  life  has  greatly   improved  and  his  parents  are  able  to   enjoy  time  with  him  in  ways  that   they  never  had  before.  

The exciting thing is that he has come so far and has been able to learn so much in his adult years.

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Suggested Reading

The RDI Book By Steve R. Gustein, Ph.D.

CLICK ON THE LINK OR BOOK TO ORDER VIA KINDLE

Autism World Magazine - 65

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Author’s Bio

Kim Isaac- Emery is an autism specialist with experience since 1997 specializing in parent training, working with teens and adults who have autism spectrum disorders, and distance consulting. She is a Certified Relationship Development ProgramÂŽ Consultant. She has a Masters degree in Counseling Studies and a Bachelors degree in Psychology. She owns Autism with Excellence, an autism consulting company and is the autism correspondent on Theories of Mind radio show the 2nd Tuesday of each month on 1110am KTEK Houston. Visit www.autismwithexcellence.com for more information.

Autism World Magazine - 66

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Autism World Magazine - 67

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The Sisters  Who  Inspired  the  Story  -­‐  Leah’s  Voice     by:  Lori  DeMonia

   

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“I love you!” Is what every parent hopes their child will say to their new baby sibling upon arriving home from the hospital. But when our three-year-old daughter with autism said those words to her new baby sister without any prompting, we couldn’t have been more surprised and thankful.

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Sisters: Leah and Sarah

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We're In This Together Leah was diagnosed on the autistic spectrum at age two and lost much of her language starting at 18 months of age. Moments of breakthrough communication were always something to celebrate, and still are to this day. As our daughters grew, they always stayed loving and supportive toward each other.

I began to imagine what would happen when our younger daughter started making friends and how she would respond to questions about her sister. This inspired the children’s book, Leah’s Voice. The fictional story shares the moment a young girl is told about her sister’s autism diagnosis.

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It also embraces how having a sibling with special needs can have a positive impact too. Learning at a young age to have compassion and accept others’ differences, makes siblings exceptional role models for their peers. One example of this was when Sarah, our younger daughter, started attending the same school as Leah. We knew she was an extremely loving and supportive sister, however, faced with the unknown comments or questions about her autistic sister could be awkward or embarrassing for a 2nd grader. Her older sister also had a oneon-one aide who accompanied her during the school day, making it more noticeable she has special needs. A very telling moment was the day her sister darted into her classroom to say “hello”. After the aide escorted her sister out, our daughter was left with all of her classmates looking at her.

Without hesitation she said, “That's my sister Leah. Sorry she came in here, she just wanted to see me. Things are a little harder for her because she has autism.” Not only was she not embarrassed, but she proudly stated that was her sister. To bring awareness to autism, our younger daughter now in 5th grade, initiated the first autism ribbon campaign for autism awareness day in her school. Although the story shares the challenges autism brings, it also celebrates the abilities of those on the spectrum. Leah’s award winning artwork is not only part of the story, but was also incorporated into some of the illustrations by the illustrator. Creating a story that would be useful for families and educators to start a discussion about autism, and teach acceptance and understanding, was my goal when writing Leah’s Voice. Through a young girl’s example, the story encourages treating everyone with kindness, and to give the gift of belonging to those who need it most.

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Leah’s art: Lady With Polka Dot Cape

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HOW

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ABOUT THEM APPLES THE CALMING SURF

CLICK ON PICTURE WHEN ONLINE TO VIEW OUR

AMAZING VIDEO

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Unsung Hero - Robbie by Sandy Dennis - Dayton, Ohio I want to nominate my son he's 15 non verbal and my moon and stars. He has shown me without words how much he loves me every day, how he's happy when I do things for him. I didn't know about autism before he was born but I know so much because of him. I couldn't imagine my life without my bubba.

TO NOMINATE YOUR UNSUNG HERO EMAIL: STORY@MAGSWEST.COM AND DON’T FORGET TO SEND PHOTOS

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Robbie, or as we call him ‘bubba’, will be 16 on May 13. He is completely non verbal and an absolute hero.

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IMAGINE...

your magazine, school newsletter, or publication on the Apple Newsstand.

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

Email: contact@magswest.com Autism World Magazine - 76

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Sensory, Fidget, Educational & Therapy Products – Australia Resources for Special Needs Australia Facebook group has put together a list of Australian Websites for Sensory, Fidget, Educational and Therapy Products.  We hope you find this useful. Click here to view online.

Published free in association with Autism World Magazine.

Autism W rld Magazine

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Our W rld DENMARK

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AUTISM IN DENMARK A SPECIAL  REPORT  ON   SPECIAL  SCHOOLING   Birgitte  Bjørn with  Director  Torbjörn   Andersson,  The  Foundation   Samraadet  and  Birgitte’s  son   Nicolai  Østergaard  Jensen.    

Birgitte Bjørn  is  a  parent,  Autism   advocate,  researcher,  author,   member  of  Autism  Denmark,   Member,  The  Danish  National  Parent   Association  for  Autism,   Landsforeningen  Autisme. -­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐ Historically  speaking,  Denmark  has   been  a  leading  country  in  the  autism   and  disability  Rield.   Danes  enjoy  a  high  standard  of  living   and  Denmark  ranks  highly  in   numerous  comparisons  of  national   performance.

This includes  education,  healthcare,   and  protection  of  civil  liberties,   democracy  governance  and  human   development.   But  Autism  in  Denmark  has  gone   through  large  changes  over  the  last   10  years,  and  is  still  doing  it.    Not   always  for  the  better. New  large  initiatives  and  well-­‐ researched  projects  are  taking  off,   while  there  is  an  increasing  de-­‐ specialisation,  increasing  budget  cuts   and  a  signiRicant  decrease  in  the   amount  of  students  and  people   receiving  specialised  help  or   education. Autism World Magazine - 79

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Some Facts  about  Denmark Estimated  population                      5.6  million            (2014)   Area                                                        42.915.7  km2 Municipalities                                  98 Ordinary  Schools                1312                                  (2013) Special  Schools                                  181     (2013) Pupils  in  Ordinary  Schools            558.581     (2013)   Pupils  in  Special  Schools            9.060     (2013)

With 98  municipalities  in  Denmark,   all  self-­‐governing  with  their  own   standards,  levels  of  service  are   different  dependent  upon  where   you  live.  Some  municipalities  are   rich  and  some  are  not  so  rich  and  it   has  an  impact.  

It is  a  part  of  the  Danish  welfare   system,  namely  that  these  Rields  are   funded  through  taxes.  Danish  taxes   are  high,  between  38%  and  56%  -­‐   depending  on  your  income.  On  top   of  this  there  is  the  high  custom  on  of   25%.

Some parents  of  an  autistic  child   choose  to  resettle  in  another   municipality  because  of  the  low   service  level  in  their  existing   municipality.  

The Psychiatry  Specialised   elementary  education  is  currently  a   subject  of  high  political  interest,  due   to  the  increasing  costs,  and  the   want  of  politicians  to  bring  down   expenses  by  relocating  funds  from   specialised  schools  to  regular  ones.  

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There now  is  an  alarming  focus  on   removing  children  with  special   needs  from  a  specialised  school,  and   placing  them  in  regular  ones,  as  well   as  removing  the  demands  for   specialised  /  tailored  education.   This  is  described  as  inclusion.  It  is   roughly  deRined  by  the  national   association  of  municipals  as  follows:   The  placement  of  disabled  children   in  local  schools,  so  the  pupil  has  the   opportunity  to  learn  the  same   lessons  as  regular  children,  such  as   conforming  to  the  structure  and  the   norms  of  the  school. Due  to  student  transfers  several   specialised  schools  are  getting  shut   down,  and  the  highly  experienced   and  trained  staff  is  left  to  seek  jobs   elsewhere. Determined  politicians  are  also  quite   adept  at  shedding  negative  light  on   diagnoses  and  slandering  them  with   wrong  and  harmful  ’knowledge’.   Because  without  a  diagnosis   municipals  aren’t  required  to   provide  the  same  aid  as  they   otherwise  would  have  to.  

The goal  of  the  government  and  the   national  association  of  municipals  is   that  96%  of  all  students  should  be   included  in  the  normal  school   education  by  2015.   But  Inclusion  requires  an   investment. In  order  for  inclusion  to  be   successfully  accomplished,  there  has   to  be  an  investment  in  specialised   education  for  staff,  new  ways  to   share  and  implement  new   knowledge  as  well  as  cross-­‐Rield   cooperation  and  policies,  specialised   materials,  tailored  environments  and   so  forth.   And  the  funding  for  this  has  to  be   present  in  order  to  support  the   project.  But  there  is  a  distinct  lack  of   quality  in  the  current  inclusion   process,  according  to  Autism   Denmark  and  the  Danish  ADHD-­‐ association. Budget  cuts  are  made  for  the  local   schools,  and  the  student  with  autism   becomes  the  victim.  

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The consequence  of  including  the   student  with  autism A  regular  class  usually  contains: In  a  specialised  school  the  student   would  be  in  a  tailored  environment,   and  taught  both  regular  school   courses  such  as  math,  history  and   English,  as  well  as  receiving  training   in  social  skills.  All  of  this  would  be   done  by  experienced  and  specially   educated  teachers  and  educators.   Said  student  would  now  be  included   in  a  larger  classroom  with  25-­‐30   students,  and  taught  by  teachers   with  limited  or  no  knowledge   of  developmental  disabilities.   Teachers  who  may  not   have  had  specialised   courses  in   understanding   and  dealing   with  autism,  of   teachers  who   may  not  be  very   motivated  for   receiving  a   special  needs   student,  in   addition  to  their   normal  class.

• 2-­‐3 students  with  developmental   disabilities • 2-­‐3  students  with  learning   problems • 4  students  who  don’t  speak  Danish   as  their  Rirst  language • 2  students  with  social  problems The  inclusion  of  special  needs   students  have  simply  made  to  great   demands  of  the  staff.   Several  teachers  have  already   asked  students  to  remain   home  from  school  trips,   workplace  visits  and   theme  weeks.   The  staff   simply  can’t   handle  if  the   student  should   react  negatively  on   a  new  situation.   The  staff  lacks   knowledge  and  by   extension  the  tools   to  solve  situations   like  that.

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“ Politicians making diagnosis a dirty word” Autism Denmark  receive  an   increasing  number  of  messages   from  frustrated  parents,  telling   the  same  stories  of  stressed  and   restless  children  who  are  refusing   to  go  to  school,  due  to  the  negative   experiences  associated  with  it.   But  even  worse  is  that  the  parents   also  tell  of  threats  by  the  municipals   to  remove  their  school-­‐avoiding   children  from  the  home. The  situation  is  now  actually  worse   than  what  is  described  by  Baroness   Mary  Warnock  –  the  woman  behind   the  idea  of  inclusion,  who  herself   have  rejected  the  notion  and  have   been  left  to  question  the  effects  of   inclusion  of  autistic  students  in   regular  schools.

Read what  Mary  Warnock  in  2010   said  about  the  special  needs  an   autistic  child  has,  and  how  those  are   met  in  large  schools  with  rigid   administration,  and  most  of  all  how   these  behaviours  are  hurtful  to  the   child  in  question,  leaving  them   feeling  left  out  and  odd. Politicians  have  meanwhile  been   very  adept  at  making  diagnosis  a   dirty  word.   Without  a  diagnosis  the  authorities   don’t  have  anywhere  near  the  same   responsibility  to  help  the  person  in   question,  since  a  course  of  action  can   be  hard  to  determine  without   knowing  what  is  wrong.   This  way  the  municipals  save  money.

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Birgitte

While it  is  possible  that  municipals   will  save  money  short  term  with   various  miscellaneous  cuts,  the  cost   will  be  too  great  for  the  individual   with  autism,  who  often  isn’t  able  to   commune  their  discontent.  But  long   term  the  society  will  deRinitely  also   pay  the  price,  when  these  people   aren´t  given  proper  support  through   education  and  end  up  on  welfare   support,  with  stress,  depression  or   worse.

The institutionalised  won’t  have  a   very  fulRilling  life  either  when  staff   and  aid  is  constantly  removed  due  to   budget  cuts. This  is  a  very  sad  development  to   face,  knowing  that  the  Denmark  has   such  a  high  standard  of  knowledge  in   the  disability  and  autism  Rield.

Birgitte

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Autism World Magazine Issue 24  

Because We Care

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