RHUBARB

ISADDs Newsletter April 2017 Edition 74

Editorial
Daryl Cooper
Autism Awareness
This edition has been timed to coincide with World Autism Day (April 2nd April 2017
2nd). The month of April is Autism Awareness Month with various
Autism-related special events. There is so much to list. Google
Autism Awareness month to find out more.

It recently came to my attention that there is a lot of on-line debate

about whether or not Intervention for ASD is some sort of crime, or
violation of a persons rights. Before I proceed, I should say that I
have not investigated this debate, but I have been aware for some
time that there are people who claim that persons with an ASD
should be allowed to develop naturally. Such ideas are misguided
and ill-considered.

Firstly, every child born into this world receives some form of
intervention. When a baby cries, parents intervene to alleviate its
distress. When an infant attempts to eat something harmful, or to
touch something hot, parents intervene. These interventions help In this special
ensure that the child will survive and many more interventions will
happen to as the individual grows towards adulthood, all with the Rhubarb Edition
intention that the person can survive in this world. While some we share some
diagnosed with an ASD will manage to survive in society without any
formal intervention, experience and years of research tells us that inspiring stories
many, in fact most, will not. along with a
We know enough about the symptoms of Autism to know there are collection of
many obstacles to living an independent, fulfilling adult life. If
Intervention can moderate, or even eliminate, those symptoms (as memories and
ABA certainly can), then not to provide it is more like a crime! photos to
ISADD has been providing Intervention Services for long enough celebrate Autism
now that many of its early clients are now young adults. I have yet to
meet even one of them who is not grateful for the help they got. Awareness for the
In this edition of Rhubarb we have some inspiring stories about what
first week of April.
ABA therapy has achieved for some young people with ASD. Hope
you enjoy the articles.

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Where are they today?
Children who used an interim
visual communication form:
What can they achieve?
On a recent visit to Indonesia I had two very
pleasant surprises:

I received a parcel from one of our students

with whom Yayasan ISADD Indonesia had
started when she was just 2. At the initial
assessment, I recommended COMPIC
exchange and the teaching of a COMPIC
vocabulary as language development was
significantly delayed. By the time she was 4 she
had progressed to spoken language and her
program focused on the social pragmatics of
language, and improving grammatical
structures. She had responded very well to the
use of visual supports, and with language
improving, so did her social understanding.
Many years went by and progress continued,
with therapy fading and blending into
counselling, in to conversations. On my last visit
she mentioned her ambition was to write
historical novels and draw. Her drawings were
exquisite. She had also completed a manuscript
for a novel, and what I found in the parcel was
the published novel Vampires at Hollinrood
by Tryina Denouement (her penname). It was
published under the Fantasteen label - books
for young teens. The author was just 16. How I
wish I could read it in the original.

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Another Inspiring Story taught other mothers to use it too. Today he does
have limited speech, can label many nouns, and
Another pleasant surprise was meeting the can answer basic questions although it took a
mother of a young boy now 15. He started with long time to achieve. He reads at his language
Yayasan ISADD Indonesia when he was 3 level, and he can use the computer keyboard and
years old. He was very active with good visual an iPad for communication. It has not been easy
skills but no language. He too started on a but because he can communicate, his frustration
program of COMPIC exchange and a COMPIC levels are not an issue and he is a nice kid to be
vocabulary and everything looked positive. At 4, with. Above all his visual skills have developed
on my next visit, he had improved in all but into art and his paintings were displayed in public.
language, and that remained an area of difficulty He also has made some designs which have
over the year. He was using his COMPICs well. I been reproduced onto cushions. He has a hobby
had to admit that he probably would not get which he enjoys, that will gain him respect, and
speech, even though he had communication. he can market his designs. The pictures and
Mother not only used COMPIC effectively but designs are below.

3
 So there we have shared two very different young people who are establishing themselves
in the community, and who are contributing. Both had to deal with ASD and difficulties with
language. Both got about 20 hours of intervention weekly in their early years and both used
COMPIC extensively while it was still needed. She moved on to early speech and caught up
with peers. He, unfortunately, had a language impairment beyond ASD. COMPIC support
was used differently with each, to meet the specific needs of the individual.

Why use Compic? increasingly popular - although not always used

to the best advantage.
ISADD has always relied on visual supports, in
the form of pictographs, to assist children with A meta analysis is a review of a number of
language difficulties to access both functional studies to look for common outcomes. Several
communication and language. However, not all have come to similar conclusions. Kai-Chien Tien
parents are comfortable with the use of COMPIC (2008) reviewed 11 articles and concluded that
and fear that if children learn to use it they may pictograph support promoted positive gains in
not try to talk. This is not the case, and the functional communication skills.
reasons for using COMPIC as an interim form are Sulzer-Azeroff 2009 reviewed 34 articles and
many, while the evidence also holds up. Here is a concluded that [it is] indisputable that
quick list of the benefits: evidence is growing for interim pictograph
support. Gantz et al 2012 reviewed 24 articles
Provides an easy and fast way for child to
and concluded that Augmentative systems
learn to make requests to adults and thus
improve communication.
reduces frustration with this initial step in
communication. There is no evidence to suggest that it holds back
Makes a child aware of word sounds (difficult speech acquisition. But we do have anecdotal
to remember) by associating them with evidence to show that children who were not
pictographs (easy to remember), and thus provided with this visual support often have
triggers retrieval. difficulties and can miss out on making the best of
Strengthens the association between the early years when development is faster and
COMPIC/word and the object it represents, the brain more flexible.
thus making it functional and not just a sound
pattern to be repeated in echolalia. Jura Tender
Helps child to see how words are put together
in different combinations to make grammatical
sentences.
For children who are, for some reason, not
able to actually talk it provides a way to access
reading and writing as a form of
communication.

In the literature, evidence for the efficacy of using

pictographs is growing, and PECS is becoming

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Where are they today? Welcome to the World A Journey

Josh 14 In February 2003 our beautiful son, Joshua was

born. In the birthing suite, we can both remember
Many thanks to the McLean family for sharing holding him close and looking into his eyes and
your story with our readers. I have known Josh for saying, Welcome to the world Joshua.
ten years now, and what a journey he has had!
For the next year or so we made our Josh feel
Josh is lucky to have parents who are wonderful
loved, warm, and safe. He loved to look into his
advocates who work tirelessly to enable Josh to
mums eyes. We did everything that a parent
reach his potential just like any other boy his age.
would do. He was our first child, we wanted to
At times, it has felt like a battle with the education
help him make sense of the world around him.
system but our fight to ensure he transitioned and
remained in mainstream has certainly paid off this What we didnt know was that Joshua and the
year. Josh now has a group of friends at school world didnt really get along. It was the little
and a social life outside of school - which was a things at first, refusing to eat from 6 months of
big ticket long term goal of ours. Well done Josh age, the words that he forgot, the avoiding eye
on your continued efforts in school, and in contact, not responding to his name when other
overcoming many barriers over the last ten years. family members came to visit, the hand flapping,
obsession with trains & wheels, lining up of toy
Larni Mullan
cars, & being capable of running in a circle for five
hours a day. Everyone kept telling us its just a
phase he is going through or I was a late talker
too, doctors and family clinic nurses never asked
the right questions.

After our daughter, Georgia was born, life was

really difficult, professionals purely wanted to
blame post-natal depression and were not really
interested in what our problems really were. Like
our 2-year-old son doesnt know how to ask for a
drink, and will bang his head against a wall
instead. Josh still had never slept through the
night even once. It started to become obvious to
others that Josh wasnt engaging with the world
around him.

Still no-one could bare to tell us what we really

needed to hear. We told everyone who would or
even wouldnt listen that we needed help. It was
then a Speech Therapist that told us Josh was
displaying autistic tendencies.

It hit us like a bolt of lightning we then needed

to know for sure. After the huge assessment
process in December 2005 (what a Christmas!)
the official diagnosis was confirmed, Josh has
AUTISM.

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We grieved for the son we thought we would have We realised that the early intervention window
and worried about growing old and never dying. would not be open for long.

Josh was then allocated DSC-funding for therapy

with a large generalist provider. They were poor
at their service being neither a specialist autism-
focused therapy provider nor having properly
trained staff. During 2006, Josh got next to
nothing as far as therapy was concerned. They
even accessed our funding to deal with our
complaints about the poor level of service!

We later took them to the Office of Health Review

(now called Heath & Disability Services
Complaints Office) and won a two year battle to
get Joshuas therapy funding back.

DSC reallocated us to an organisation called

ISADD. Sometimes fate hands you a huge slice
of luck ours was a young fresh-faced therapist,
now psychologist, called Larni. With Larni we
then embarked on a hugely intensive program of
home-based interventions. Larni helped us
determine what needed to be done and we
worked incredibly hard over the following two
We had talked about Autism with various
years to reach every little milestone. Some things
professionals from Josh being 9 months of age as
worked and some things didnt. We went forwards
we had concerns about Autism. We had Josh
and backwards but never gave up. There was
vaccinated with the MMR vaccine AFTER his
important progress.
autism diagnosis!
In the pre-iPad era we had to source resources
Surely with a diagnosis we were at least on the
from software programs, print them out, laminate,
right path to fix our sons extensive problems -
and add Velcro. We had pictures stuck
little did we know that we had much more to come.
everywhere so that we could communicate with
You see, we were now in the system. A confusing
Josh and start to reinforce positive behaviour,
world of allocations, funding, budgets, and
foods he could choose from, activities available
therapies. It was a nightmare, as if having a child
and routines.
with autism is not enough, the constant fight for
help just adds to our already sleepless nights. The time for school then arrived and we knew that
things would get even more difficult for a while.
Everyone told us that early intervention for Josh
We managed to get Josh into a kindy early
was the key. This is supported by research that
intervention program at Canning Vale Education
highlights that the earlier and more intensive that
Support Centre (CVESC) for four half-days a
intervention the better both the child and familys
week. It was incredibly difficult to manage Joshs
prognosis for the future, plus massive savings
complex needs, a new baby daughter (Georgia) a
long term for the rest of society. However, being
full-time small business at home (Jan) and full-
able to afford and access the therapists enough
time work (Andrew).
was a whole different issue.
We immersed ourselves into school life at
CVESC. However, every day was about new
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challenges, new opportunities, and new education yet. Larni continued her home-based
milestones. We had to constantly advocate for guidance and support (complemented by School-
Josh and cajole well-meaning staff into trying new visits) but we and Josh were ready to step up our
strategies to progress Josh. Much of our home-based therapy to a new level. He was
direction during this difficult year was set and progressing extremely well and was attempting
inspired by Larni. Larni helped us identify what verbal communications not just using pictures.
we needed to do with Josh at home and then We were very much on track.
helped us ensure that his school complemented
this therapy. She also visited Josh at school to
reinforce these messages and help us work out
new tasks and strategies that would complement
what school were teaching so we were all on the
same page.

We then encountered fresh difficulties with Joshs

pre-primary year. Our home is technically not in
the catchment area for CVESC, plus the
government drive was to insist kids attend their
mainstream feeder school, Ranford Primary
School, for the remaining half days. Constantly
ferrying a child with comprehension,
communication, behavioural, toileting, and eating
difficulties seemed like a recipe for disaster. Not
to mention by this point our daughter desperately
needed to be able to access some children to From Josh being very little we had made a point
play with of her own age. After many knockbacks, of a like it or not we were going to read books
we then wrote to the Director-General of the obviously starting with small words and gradually
Education Department to move Josh to the building them. Through the therapy process Jan
Kenwick Special Needs School as it offered five even made books with basic pictures and even
full days per week of schooling. cut out the junk mail pictures and carefully
described the images with basic symbols and
With a supportive Principal we were all able to
words. Turns out Josh loved this method of
continue our focus on Josh, and Georgia could
learning and we were able to intensify this style of
attend a pre-kindy in Parkwood as we couldnt get
teaching as it was providing him with a great
back to Canning Vale in time. The focus for Josh
comprehension base to build on. (Jan was
at Kenwick school was on communications and
horrified when Larni had her cut the words off the
life skills. It was very difficult for our family
EXPENSIVE flash cards and put Velcro on the
travelling & managing our daughters needs.
back of the word and front of the picture to see if
Larni, through ISADD, continued to provide our
Josh could match the word to the picture! HE
family with much needed support. There were
COULD! WOW Josh can read!) So, we continued
more visits to school from Larni, swimming
to build on the reading and ensured that as many
lessons (the School had a pool) and we felt we
pictures as we could had words attached, as even
were making progress, the recommendation from
if he did not understand the words yet at least
the school at the end of the year was for Josh to
they were in his head and we could build on the
return to CVESC for Year 1.
comprehension later where possible.
When Josh was ready for Year 1, he returned to
Josh was still not sleeping well through the night
CVESC on a full-time basis as it was still not
so with Larni came the advent of social stories
appropriate for him to enter mainstream
7
and Josh learning about when he should go to campaign to move Josh to the co-located
bed and when he is allowed to get up. 7pm 5am Canning Vale Primary School (CVPS). This was
was as good as we were going to get. Josh still not only difficult as we were still out of boundary
uses these times even today. We did manage to but the school was reluctant to accept that they
convince him later that Friday and Saturdays he could not teach Josh any more in this zone as he
can go to bed a bit later as there is no school the was already way ahead of the other students and
next day. Mind you, he still gets up at 5am! their resources were just not meeting his needs.
Josh had way outgrown their library of books and
Eating was another of the major problems we had they would not teach the class to his higher level.
to contend with. This was a terribly hard area too Many letters to the Education Department
as Josh has extreme sensitivities in his mouth, resulted in Josh being accepted into CVPS.
not to mention the ritualistic routines we needed Consequently, during the first half of year 5 he
to contend with of how food needed to look and transitioned across to a mainstream school
be set out. Again, Larni came to the rescue. setting. In the second half of that year, he moved
Here we had to deal with the assorted problems to a fully mainstream setting. This included
of the sensitivities, behaviours, and reactions that attending the year 5 camp in Kalgoorlie for six
Josh displayed. But very gradually he started to days. Josh loved how quiet the classes were.
accept new foods bit by bit. Slowly we were able
to make a meal and over time Josh has In year 6 Josh was fortunate to access a teacher
progressed to eating some wonderful meals, and who was very driven to see Josh further progress
is now quite willing to attempt new foods with little and he did. His graduation from primary school (a
issue. He can go to a restaurant and select items real milestone), then meant a move to high school
from the menu and request for ingredients to be as a mainstream student.
left off the plate or burger if he doesnt want it.

Larni taught us about prompt boundedness, when

teaching Josh various techniques how he would
assume that another person was always going to
be there to do things with or for him. Josh just
could not make decisions about anything, he just
did not know how. From the tiniest things like
squeezing a tube of toothpaste on your own to
riding a bike without someone else pushing you.
Josh was struggling with the concept that he was
able to make his hand work to squeeze the tube
and his feet could power a bike. As much as we
wanted to ensure Josh got what he needed, we
also needed different methods to teach very basic
concepts that he could not understand by just
watching someone else do it. This also
progressed to the numerous steps that are
required in areas we would consider to be so
basic, like getting dressed.

Joshs progress Year 1 4 was remarkable.

Josh is a really hard worker at both home and Josh Graduating from Primary School
school as he had just grown to know that by doing
the work he was making wonderful progress. At High school means new teachers for every lesson
the end of year 4, we embarked on a new in different classrooms and lots of new students
8
and many more new challenges. Josh had been friends, and this is an area we are very happy to
well prepared for the whole concept and be dealing with.
undertook the task magnificently. Although we
had to constantly (and occasionally still do) Josh loves movies and this has been a place he
remind their disability support unit that Josh is a has been able to invite his friends to meet him
mainstream student with Education Assistant also helping him build these friendships further
support in a mainstream setting, and not part of and giving him some independence, especially
their Autism ESC. Josh has worked hard to move when having a burger after the movie giving him
to mainstream and does not want to be in ESC an opportunity to chat to his mates.
(sigh people like labels, and to get everyone We are also now considering other areas we did
who has a difference into one zone for their not know we would even have to think about.
convenience). Being in mainstream, Josh Like what options should Josh be selecting for
undertakes all the core the subjects and has next year as year 9 can determine job
access to all optional subjects and has proven opportunities into the future. Josh loves cooking,
himself worthy of being there. media, and web page design & animation. He
As with many year 7 students we had to deal with also wants to go to University, as education has
a few bullies who thought Josh an easy target but been such a huge part of his life.
with our nagging, the school had taken the issue Larni & ISADD have been a very solid support to
very seriously.
our family over the last decade which our family
In year 7 Josh was quite on his own at school, so appreciates enormously.
just played ball against a wall; making friends has
eluded him as he has just not known how.

So, after discussions at the end of year 7 with the

school, come year 8 the school got Josh and
some other nice kids to start playing some 4
square ball games together during recess and
lunch times. Josh was so happy to have other
kids to hang out with. Josh then started to ask
questions about how his sister always has
playdates with her friends and how can he get
together with his new friends?

High school is completely different than Primary

school for knowing how to contact the parents to
ask for their permission and kids are likely to want
to make up their own minds.

So, Jan handwrote some letters for Josh to give

to the kids he wanted to hang-out with outside of The journey is not yet over and we continue to
school hours so the kids could give them to their face new challenges quite regularly. Saying that,
parents. Mid-year 8 Josh was getting together however, we would not change a thing! We are
with a few new friends. proud to bits of Josh and his Autism as this is a
part of who he is and always has been and
Josh is now in year 9 and we have a whole new always will be.
struggle on our hands, that is to keep up with
Joshs social calendar. He has some wonderful The McLean Family

9
 When he was in high school, again with the
A Parent Contribution from New support of the school and teachers, his politeness
Zealand and sensitive nature helped him make more
friends at school. Marcus also received good
support for his school curriculum. His teachers
were willing to make amendments in the
curriculum for Marcus to assist him with his
academic work. He finished his high school in
2016 with a NCEA level 2 certificate.

eaving his high school had given us with

L another set of challenges. The end of high

school also meant the end of seeing his
school friends on a daily basis. He dearly
treasured his time at the high school. Marcus
began to learn that friends come and go, and he
is keeping in touch with them on Facebook. While
his classmates have gone to university, this year
he will be attending a trade school doing a
arcus was diagnosed with autism when

M he was 3. He is now 18 years old.

Marcus has been receiving ABA therapy
for 13 years with ISADD.
painting and decorating course.

In order to increase his capability to be more

socially aware of the surroundings and possibility
of a job next time, a pharmacist was kind enough
The initial journey was tough. Every opportunity
to allow him to volunteer his service every
that I had, I would be applying some form of ABA
Sunday at the pharmacy for an hour. Every
with Marcus to change his behaviour. Some
Friday, he would also volunteer his services
modifications took a long time to suppress or
working in a supermarket for two hours where he
overcome and every success often lead to
does the shelving.
another set of challenges. Together in our journey,
we received fantastic input and advice from Jura t home, to give him some form of life skills,
Tender, Susan Farmer, and other ISADD staff.

Marcus' early years at school were challenging.

His social behaviours created unnecessary
A Marcus has regular tasks/routines. He
does the vacuuming, cleans the bathroom
and toilets, does gardening, washes the
dishes, hangs and irons clothes, and prepares
attentions among parents and students. We had
simple meals on a regular basis.
regular parent/teacher meetings where I had to
educate, suggest, and made recommendations to
teachers in managing Marcus with some success.
Most teachers had no clues about autism, some
refused to listen but there were a few were willing
to help.

Things started to change when he was in

intermediate school. Of course, academically, he
was behind. Our objective was to improve his
social skills and with the help of his teacher and utside home, we try to find a sport that he
his classmates, he had a core group of friends
that wanted to hang out with him. O likes, or that we encourage him to
participate in. Our objective is to find a
group sport where he has the opportunity
10
to make friends. At present, he is good in pleasure to have Susan as Marcuss case
mountain biking, skiing, and badminton, and manager. Thank you, Susan.
recently got hooked on Cross fit classes. Each
group of activities required him to socialise and
communicate at the same as time having fun.

Marcus also goes to church regularly. He loves

meeting up with the Youth group with members of
the church. The church members treat him as
Tips that helped Marcus succeed
part of a Christian family.
to date:
Of course, we still have challenges with Marcus,
but we are so proud of Marcuss achievements. Work very closely with your ABA
Our goal for him is to ultimately equip him with the case manager and keep working at
skills with which he can live on his own - the goals in your individual program.
independently.
If the program is not working discuss
The ABA approach has helped Marcus in so another strategy.
many ways. For those parents who just started Try to make every incident an
the journey or already in the journey, I know how opportunity for you to apply ABA.
you feel. My husband and I had self-doubts, we
Generalise your goals across
had been there, done that, got a t-shirt in
analysing and trying all the different therapies, all
different settings and different
for a quick fix cure. My advice is to keep people.
persevering with ABA and give it a really good go Try to be consistent, and let every
because ABA does work. member of your family know the
goals.
I would like to take this opportunity to especially
thank Jura Tender for being an awesome clinical Be inquisitive and find out how your
psychologist. She has such a wealth of child is doing at school especially
knowledge. When I first met Jura, she was blunt the unsupervised times such as
and critical. My husband and I were pleased she before school, morning tea, and
that she did not sugar coat anything. lunchtimes.
There were two lines of wisdom that Jura had Lobby to the school about what your
said that have stuck with me all the time. First, child needs.
she said along the lines of Try to train your child
to be likeable, so that others would like to be
around him. That was a very expensive one liner,
but it has been proven true all the time. Another
one that came to mind was if your child cannot
sit still, he cannot learn. That was one of the
biggest hurdles we had to overcome in our early
journey. And we would like to make a very special
mention to a special member in the ISADD team.
That is Marcuss case manager, Susan Farmer.
Susan knows Marcus inside out. It has been a

11
 Parents Workshop
Cool Kids

Parents learnt how to help create stepladders to

target anxiety-causing situations. Each session
ISADD ran the Cool Kids program again, this time
started with psychoeducation targeting different
with the parent and children workshops running
aspects of the program - for example, causes of
concurrently. The Cool Kids program was
anxiety, and goal setting.
developed at Macquarie University and has been
designed to help children manage and cope with
their anxiety. The version of the Cool Kids
program that we used has specifically been Arguably, the best part of the parent workshop
adapted for children who have been diagnosed was being in a room with people who understood
with Autism Spectrum Disorder. and shared the challenges of parenting a child
living with autism and anxiety.

The program teaches children to recognise the

signs of when they are feeling anxious. Tools
and skills used to counter anxiety are taught with
the help of visual supports. The program is
designed to work closely with the parents who
receive psychoeducation around anxiety and are
taught skills to equip them to help the children
with maintenance of skills learnt.

12
 Our second lot of graduates from the Cool Kids
programme celebrated their final session with a
park picnic on the 25th March 2017. Feedback
from our young participants informed that they
enjoyed learning about Cool Breathing, The
Relaxation Game, how to use positive thinking to
deal with tough situations and using the
stepladders to work to overcome their fears.
They loved achieving their weekly rewards for
working on their step. They also all agreed that
the thing they liked most was meeting other boys
with Autism who were dealing with similar issues
at school, and they are looking forward to
continue to catch up outside the group. The
rewards they have earned from their parents for
working through feared situations on their
stepladders are certainly well deserved. We
loved seeing Oliver present his speech to the
group to conquer his fear of public speaking,
witnessing first hand Noa managing to climb on
top of a very high piece of playground equipment
fighting back his fear of heights, and hearing
about how Tristan managed to make it through an
Our Young Graduates entire assembly for the first time to combat his
anxiety related to being in noisy situations. Well
done boys.

We are looking forward to commencing our third

12-week Cool Kids programme later this year.
Please contact the office if you are interested in Nysha Joseph (Case Manager)
your child attending (with or without ASD) if they
are between 7 to 12 years of age or if you would Tania Dawson (Clinical Psychologist)
like to discuss the programme further with an
ISADD psychologist.

13
 Creating Autism
Awareness: a
collection of photos,
past and present,
from social groups,
caf catch ups,
support groups and
family celebrations

14
Lithuanian News Singapore News

Interest in ABA, and especially its use in the We welcome aboard Kheng Yan as Singapores
treatment of Autism, continues to grow in Executive Coordinator. Director and Program
Lithuania. The Education Department is Manager Johnny Fok is very appreciative of the
particularly keen to use ABA strategies in its extent to which she is not only able to assist him
schools, and ISADD has been delivering a with the administrative workload, but has
number of workshops for school personnel. When reorganised various processes for increased
visiting, Jura Tender, Emina Cholich, and Isabella efficiency.
ODonovan have all presented, and ongoing
liaison is maintained with local ISADD personnel.

https://autismawarenessdayperth2017.splashthat.com

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