autism world magazine issue 24
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Because We CareTRANSCRIPT
Autism World Magazine - 1 .
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Autism W rld
Issue 24 / February / March 2015 essential reading for those who care
Autism in our HomeNeed some head space?
Unsung heroes
Autism World Magazine - 2 .
Autism W rldWelcome to the online version of Autism World Magazine
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C O N T E N T SFebruary/March 2015
10AUTISM IN OUR HOMEErin RaynerMeet Maximus and his special ‘sensory space’
56ADULTS & AUTISMKim Isaac-‐Emery Is RDI right for you?Robert’s Remediation Journey
56
10
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© Copyright 2015
MagsWestPO Box 99Mosman ParkWA [email protected]
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.
08HOW ABOUT THEM APPLES A lovely surprise
19POWER DISRUPTIONDeb Flintoff
28NEED SOME HEAD SPACE?Lily Holland
38GAPS DIET: NUTS & SEEDSJacinta O’Connor
49STARTING SCHOOLCatherine Crestani and Diana Wolf
68SISTER ACTLori DeMonia
74UNSUNG HEROMeet Robbie ‘bubba’.
78OUR WORLD -‐ DENMARKBirgitte Bjørn
Autism World Magazine is available digitally for iPad, iPhone, Android devices, PCs and Online.
Subscribe free via:autismworldmagazine.com
Editor:Iain Croft
Sub Editor:Heather Paterson
Website:autismworldmagazine.com
Facebook:facebook.com/worldautism
Front Cover:Maximus
Publisher:68
74
Autism World Magazine - 6 .
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
Editor’s Note
iain crofteditor and [email protected]
www.facebook.com/worldautism
www.autismworldmagazine.com
iain proudly poses with his handmade steel mailbox
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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”
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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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The World is Overwhelming for Maximus, so we set up a ‘sensory space’ 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.
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’.
It has taken a long time for us as parents, along with his therapists, to Rind what works for him.
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.
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.
It is important he is let alone to calm down
Autism World Magazine - 14 .
“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.
The fences are double battened (as pictured above) the gates are chained locked, and the doors and windows are also locked.
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.
Autism World Magazine - 16 .
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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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
Maximus loves people and especially loves playing with his little sister.
Autism World Magazine - 18 .
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Autism World Magazine - 19 .
Puberty Blueswith 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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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.
Power DisruptionDeb Flintoff
Autism World Magazine - 21 .
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.
Autism World Magazine - 22 .
“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'.
Autism World Magazine - 23 .
Josh meeting a member of local fire brigade
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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".
“it broke my heart when the power broke”
Autism World Magazine - 25 .
Josh and Deb
Autism World Magazine - 26 .
Deb
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: [email protected]
Facebook: www.facebook.com/worldautism
Website: www.autismworldmagazine.com
Autism World Magazine - 27 .
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 - 28 .
CARING FOR THE CARERS
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.
with Lily Holland
Autism World Magazine - 29 .
Need some
Head SPACE?
Image courtesy: Daniel O'Toole, known as EARS. www.earstotheground.net
by Lily Holland
Autism World Magazine - 30 .
What does it take to make us realise
that our children need us to take
good care of ourselves?
I ask myself this question constantly,
wondering how else I can urge clients to look after their own health.
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.
It's counter-‐intuitive. We're hard
wired to attend to the needs of our
child Rirst, worry about self later. Only later often doesn't happen...
I have sung this tune before, more
than once… just as I’ve started a few
sessions of late with “I’m sorry if I sound like I’m nagging but…”
So – I’m sorry to sound like I’m nagging but…
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 autism mum) was rushed away in an
ambulance to Rind out later that she's
critically low in magnesium.
Autism World Magazine - 31 .
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.
caring for the carers
Autism World Magazine - 32 .
So maybe that’s what it takes?
Getting sick?
Is there no way to save anyone from going down that track? These days I
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
about 48 hours. Head space. Heart space. Space.
I can't say it's easy getting away...the
amoun t o f p r e p a r a t i o n h a s sometimes made me wonder if it's
even worth it. But of course it is worth it. Every. Single. Time.
A client mentioned to me that she
enjoyed some head space recently when she took a day attending to a
different chore. It wasn't really even a real break, but just the fact that she
was doing something away from
home felt like head space.
'So how would it be if you did that
regularly so you could feel that way more often?' I asked her. She
chuckled and said 'hard!'
Yes it's hard. But it's a bit like
exercising...you force yourself and it
becomes routine, and then you realise it makes you feel better.
Everything works better when you take care of yourself. And you keep it
up because once you've slipped back
into old habits a couple of times you realise that everything feels better
when you make it a habit to take care of yourself. (And when you don't...it
doesn't!)
caring for the carers
“Yes it's hard.”
Autism World Magazine - 33 .
It has to become a discipline...you
need to force yourself at Rirst.
I will keep nagging my clients regardless of the glazed look that
comes over them, because I wish I had met me about 7 years ago. And I
will keep Rinding different ways to
wr i te and say " take care o f yourselves please, in every little and
in any way you can.
Your children need you to be well,
and it's one of the best things you
can do for them. If you don't put the mask on yourself Rirst, who will help
the children?"
I know I sound like I’m nagging you…
but its for you and your child’s good,
and that’s my job.
caring for the carers
Autism World Magazine - 34 .
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.
caring for the carers
Autism World Magazine - 35 .
AND remember above all else PLEASE DO NOT SUFFER WITH STRESS ALONE.
Love Lily xx
caring for the carers
Lily Holland Counsellor/Psychotherapist.
Randwick and Parramatta, NSW, Australia. She is also available for telephone or Skype/FaceTime appointments.
Contact [email protected]
Autism World Magazine - 36 .
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Autism World Magazine - 37 .
eatplay
Learn
Essential thinking on food,
education and play from the
most respected minds
across the Autism world.
Autism World Magazine - 38 .
Jacinta O’Connor is a Nutritionist * Naturopath * Certified GAPS Practitioner * MINDD Practitioner * Additive Alert Presenter
Nuts and Seeds on the GAPS Protocol
GAPS – Gut and Psychology Syndrome & Gut and Physiological Syndrome) ‘GAPS TM is the registered trademark of Dr Natasha Campbell-McBride
with Jacinta O’Connor
Autism World Magazine - 39 .
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.
Exploring nuts and seeds
Autism World Magazine - 40 .
Salt measurements for soaking nuts and seeds
(based on 4 cups of nuts or seeds)
Pecans 2 tsp Hazelnuts 1 TbspWalnuts 2 tsp Cashews 1 TbspPeanuts 1 Tbsp Pumpkin seeds 2 TbspPine nuts 1 Tbsp Sunflower seeds 2 TbspAlmonds 1 Tbsp Macadamia nuts 1 Tbsp
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.
Autism World Magazine - 41 .
Pouring nut milk mixture into the nut milk bag
Dripping cashew milk through the nut milk bag
Autism World Magazine - 42 .
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.
Nut Milk
Autism World Magazine - 43 .
1 -‐ 2 cups of nut or seed pulp3 cloves garlicJuice of 1 lemon6 Tbsp raw tahini2 tsp ground cumin1 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.
Nut Pulp Hummus
Autism World Magazine - 44 .
1 ¼ cups of nut or seed pulp¼ cup honey1 tsp cinnamon 1 tsp vanilla extract or scrapings of 2 vanilla beansPinch of sea salt1 cup dried shredded coconut¼ 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.
Chocolate Truffles
Autism World Magazine - 45 .
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.
Stuck and Struggling to Introduce Nuts and Seeds??
Autism World Magazine - 46 .
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.
Always start with very small amounts
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
Autism World Magazine - 47 .
GAPS™ is the registered trademark of Dr Natasha Campbell-McBride. Each month in Autism World Magazine Jacinta O’Connor takes you through some of the practical steps to help GAPS work for you and your family.
And if you are using GAPS send us an email and let us know how you are going. [email protected]
Jacinta O’Connor runs GAPS workshops and support groups in Kardinya and Nedlands, Western Australiawww.gapsperth.com.au
Autism World Magazine - 48 .
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Autism World Magazine - 49 .
Starting Schoolwith 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.
Autism World Magazine - 50 .
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.
Autism World Magazine - 51 .
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
Autism World Magazine - 52 .
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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Autism World Magazine - 54 .
Kalparrin operates a variety of services and programs to provide assistance to parents and children in need.
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E-‐NewsKalparrin E-‐News is a weekly electronic bulletin covering events and information of interest for our members from the Disability sector.
Telephone: 08 9340 8094FreeCall: 1800 066 413Fax: 08 9380 6114Email: [email protected]
LocationLevel 4, Hay Street Building (near Hydrotherapy Pool)Princess Margaret Hospital, Subiaco, Western Australia 6008Opening Hours: 8:30am – 4:30pm, Monday – Friday
Autism World Magazine - 55 .
IS RDI FOR YOU?
withKim Isaac-Emery
Autism World Magazine - 56 .
Adults and Au*smRobert’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.
Autism World Magazine - 57 .
"Nurture your mind with great thoughts, for you will never go any higher than you think." - Benjamin Disraeli
Robert
Autism World Magazine - 58 .
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 - 59 .
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.
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.
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.
Autism World Magazine - 60 .
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 - 61 .
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.
Robert and Kim
Autism World Magazine - 62 .
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.
“objectives were
kept simple”
Autism World Magazine - 63 .
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 stepRobert 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 - 64 .
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.
Autism World Magazine - 65 .
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.
Suggested Reading
The RDI Book By Steve R. Gustein, Ph.D.
CLICK ON THE LINK OR BOOK TO ORDER VIA KINDLE
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The exciting thing is that he has come so far and has been able to learn so much in his adult years.
Autism World Magazine - 66 .
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 Program® 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 - 67 .
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Autism World Magazine - 68 .
“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.
The Sisters Who Inspired the Story -‐ Leah’s Voice by: Lori DeMonia
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Autism World Magazine - 69 .
Sisters: Leah and Sarah
Autism World Magazine - 70 .
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.
We're In This Together
Autism World Magazine - 71 .
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 one-on-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.
Autism World Magazine - 72 .
Leah’s art:
Lady With Polka Dot Cape
Autism World Magazine - 73 .
HOW ABOUT THEM APPLES?THE CALMING SURF
CLICK ON PICTURE WHEN ONLINE TO VIEW OUR AMAZING VIDEO
Here is a chance again to watch our terrific video
The Calming Surf.Supported by the StandUp.Foundation
http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s
Autism World Magazine - 74 .
Unsung Hero - Robbieby 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: [email protected]
AND DON’T FORGET TO SEND PHOTOS
Autism World Magazine - 75 .
Robbie, or as we call him ‘bubba’, will be 16 on May 13. He is completely non verbal and an absolute hero.
Autism World Magazine - 76 .
IMAGINE...
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Digital Publishing. It’s closer and more affordable than you think with magsWest.
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Autism World Magazine - 77 .Magazine
Autism W rld
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.
Sensory, Fidget, Educational & Therapy Products – Australia
Published free in association with Autism World Magazine.
Autism World Magazine - 78 .
Our W rld
DENMARK
Autism World Magazine - 79 .
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 IN DENMARKA SPECIAL REPORT ON SPECIAL SCHOOLING
Birgitte Bjørn
with Director Torbjörn Andersson, The Foundation Samraadet and Birgitte’s son Nicolai Østergaard Jensen.
Autism World Magazine - 80 .
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.
Some parents of an autistic child choose to resettle in another municipality because of the low service level in their existing municipality.
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%.
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.
Some Facts about Denmark
Estimated population 5.6 million (2014) Area 42.915.7 km2Municipalities 98Ordinary Schools 1312 (2013)Special Schools 181 (2013)
Pupils in Ordinary Schools 558.581 (2013) Pupils in Special Schools 9.060 (2013)
Autism World Magazine - 81 .
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.
Autism World Magazine - 82 .
The consequence of including the student with autism
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.
A regular class usually contains:
• 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.
Autism World Magazine - 83 .
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.
“ Politicians making
diagnosis a dirty word”
Autism World Magazine - 84 .
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
Birgitte
Autism World Magazine - 85 .
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