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RHUBARB
The ISADD Newsletter
August 2014. Edition 64.


Editor: Daryl Cooper
Publishers: Bill Davey, Linda Thomas, Audree
Poff

EDITORIAL

In the previous edition, I wrote about the
concerns expressed by Bob Buckley (and
others) that children with Autism may be
poorly served by the NDIS. Since then, I have
heard nothing more encouraging, and indeed
heard more that supports having the
concerns. I thoroughly recommend that
readers visit the A4 website www.a4.org.au to
learn more.

I also note that a new phrase has crept into
the NDIS rhetoric, namely necessary and
reasonable. This is used when talking about
the services and supports which the NDIS will
provide to those with a disability. This has
supplanted the original rhetoric which talked
about those with a disability finally getting
access to the services and supports they
want.

Now, it seems, persons with a disability will
get the services and supports they want, IF
they are necessary and reasonable. And of
course this begs the question, who decides
what is necessary and reasonable?

There is much to be concerned about as the
NDIS is being rolled out (as the current
jargon dictates); in addition to the concerns
about what sort of deal disabled persons will
eventually get, the complexities of the national
scheme taking over from the various State
disability services are immense, and, from
what I have experienced so far, it is a
bureaucratic/administrative nightmare. But
given the size and complexity of the scheme,
it is understandable that implementation will
proceed slowly, and that there will be
mistakes made which will need correction,
unforeseen problems to be solved, fine details
to be tuned, and misinterpretations to be
rectified.

It will be many years before the scheme is
(excuse the jargon) bedded down; longer
than the originally projected five years, I
suspect. Thus it is going to be a long wait
before we know to what extent the scheme
will fulfill the expectations created when it was
first announced, and whether persons with a
disability will really be so much better served.

Daryl Cooper
Editor

IMPORTANT: PLEASE PARTICIPATE
A message from Autism Awareness Australia
The NDIS launch sites are already up and
running in cities across the country. Whilst it's
been a long time coming, its finally here; we
as a community must stand together to ensure
that the Scheme finally meets the needs of
our children who have gone without for so
long.
So far, results in the NDIS launch sites are still
seeing very limited funding for important
things like early intervention and meaningful
support for school age children. This makes
NO sense to us. Do the government just not
understand? Is the process being undertaken
by professional bureaucrats whose
understanding of autism is confined by
budgetary considerations? It isnt a mystery
what people on the autism spectrum need
just ask their families!
We think its time we started asking the right
people, the right questions.
As such, Autism Awareness Australia is proud
today to be launching our first national survey
of parents and carers of children and young
adults on the autism spectrum.
With the national rollout of the NDIS fast
approaching, we believe its imperative to get
a clearer picture of what autism support
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services look like in Australia and identify the
gaps that currently exist in helping families
provide better care, education and support for
their loved ones with autism.
The results of the survey will assist us in
advocating the needs of our community to the
Government, the National Disability Insurance
Agency and other stakeholders during this
important planning phase.
We need as many families as possible to be
part of this national initiative and we
encourage you to share the survey with all
your networks. The survey will be open until
Friday 12 September 2014 and takes less
than 10 minutes to fill out.

We will be publishing the results of the survey
on our website in early October 2014.

Lets work together as a community to get this
right!
Thanks for helping us out
Nic
Nicole Rogerson
CEO, Autism Awareness Australia
https://www.surveymonkey.com/s/autism2014
survey

SOME THOUGHTS ABOUT THE ABAI
CONFERENCE Chicago, May 2014.

This year, The ABAI held its annual
conference in the McCormick Place
Convention Centre, a HUGE venue which
could have easily simultaneously
accommodated three or four conferences of
similar size to ABAI (4,500+ delegates).

The sprawling nature of the venue made
trekking between sessions sometimes quite
arduous, with the need to take the proverbial
Cut Lunch. Likewise, the vastness of the
space was not conducive to an atmosphere of
conviviality which had been more evident at
past conferences. Thus there was little chance
for the sort of social networking that adds an
extra useful dimension to attending. Apart
from a ten-minute chat with our old friend Gina
Green, a two-minute exchange of greetings
with ex-pat West Aussie Trevor Stokes, and a
chance sharing of a taxi with Bridget Taylor,
we missed out on meeting with other overseas
colleagues whom we usually encounter and
exchange ideas with at these events.

You may gather from the above, that I was
somewhat disappointed in this years
conference, and indeed I was, not only for the
reasons above, but because there was less
at least in the autism-relevant sessions I
attended that was truly new or innovative
being reported. Interestingly, there were more
papers and talks on the subject of ABA with
animals than in previous years it seems
behavior analysts are extending beyond
human subjects in both research and practice.
While dogs got the most attention, there were
papers on the behavior of bees, and even
cockroaches!

As I noted above, there was nothing really
exciting to report in the field of Autism, but it
was reinforcing to observe that ISADD is
keeping up with best practice approaches. In
particular, the use of picture-exchange, and
pictograms (an area in which ISADD has been
a forerunner) is apparently being applied more
widely, with several papers reporting on the
successful use of these tools.

Over the past couple of years, ABAI has also
held an Autism-specific conference. These
started as quite low-key events, but seem to
be growing in size and significance. Perhaps
this is why there was less autism news in
this years conference: and perhaps it is time
that attending the autism-specific conference
should become the priority for ISADD.

Daryl Cooper

ABAI CONFERENCE IN CHICAGO: WHAT
HAVE WE LEARNT

As usual the conference was impressive and
daunting, in fact too much so. Not only was
there an abundance of options, all sounding
good, but also the venue was vast. I had to be
very strict in making choices and picked
mainly keynote speakers, so here are some
highlights, impressions and ideas to take
away.

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There was a lot about babies, how to
diagnose them and how to work with them.
This is something we at ISADD have been
interested in. and I followed the theme, thus
missing other topics.

We are on the right track at ISADD in pushing
the diagnosis to be earlier and earlier. The
literature now points out that we can reliably
see differences in some, if not all infants, as
early as 4 months, and with some babies, the
suspicion can start earlier. This is now so
much simpler when we no longer are
searching for a delay in language
development, but are looking at the social
precursors of communication. In Perth we
have argued and succeeded for the
acceptance of earlier diagnosis, but we still
hear of parents being sent away to wait till the
child is at least 3 years old.

We are also on the right track looking at
developmental norms and noting how
competent typical babies can be. A
presentation by Pauline Flipek of the
University of Texas pointed this out and gave
a list of milestones. Babies seek eye contact
when breast feeding, and often even in the
delivery room. By 10-12 weeks, early
reciprocal conversation is there and baby
adds sound to eye contact after listening to
mother. This is done in real turn taking. Next
comes imitation of mouth movements, and if
mothers face is not reflecting bubs, bub is
confused. By 4 months there is a response to
name, by 6 to 7 gaze following, and babble is
directed at people. By 10 months we have
pointing, showing and sharing, and by
12months, following a pointing gesture and
words can be taught. All this can sound very
depressing when compared to some of our
little clients, but that is not the way to look at it.
These milestones reflect the early stages of
both receptive and expressive communication.
These milestones can give us exact targets to
teach. Flipek went on to point out that at 6
months of age 10 hours weekly was enough
to get results, with more input as the child gets
older.

In working with babies, parents are the key
players. Dr Tamis-Lemonda of New York
University posed the question infants make
sense of chaotic input. How? His answer was
that bubs learn from a social environment and
parental responsiveness promotes language.
He quoted a study where babies were taught
Mandarin, though it was not their home
language. One group learnt with teachers and
the other with a TV screen, following the same
program. You can guess which group did
better. (The former of course.) And here is the
answer to all those who have been seeking a
new app to teach their child to talk. Parents
were divided into two groups according to
their responsiveness to their children, high
responsiveness/interaction was defined by
frequency and duration of interaction by touch,
gesture and vocalisation. Also by number of
words and when and how given; for example
a label was to be given within 2 seconds of
bub touching an item of interest, words used
needed to be comments, and not just
instructions. The children of the high group
had words by 11 months, but the low group
reached that level at 21 months. There was a
big difference also in verbal memory.

This gives us strategies to teach parents of
less responsive children. It is well known that
parents may start off with the best of
motherese interaction, but a baby who does
not respond does not encourage this and
parents adapt. He concluded that tablets and
Einstein baby DVDs do not teach interaction,
people are still needed. This goes for all
babies but so much more for our group where
the social basis of communication needs to be
put together, skill by skill.

There was a session on methods of
identification, and most of our behavioural
information is based on retrospective studies,
looking at old videos of diagnosed children
and prospective studies, tracking the
development of siblings who may eventually
be diagnosed. There was reference to
biomarkers, anti brain antibodies found in
mothers placenta but this is still based on
correlation, not causation, and the ethics of
using this as a diagnosis seems dubious.
There is also a big error margin, and just
relying on parental concern has a similar
accuracy rate. I liked Dr G. Novak of California
State University explaining Autism in systems
theory as a neurodevelopmental disorder,
where we know very little about the neurology,
but the development is well defined in
behavioural terms. In summary ASD is the
result of degree of impairment in the organism
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multiplied by degree of unsupportive
environment. I liked his final comment that
potential skills do not emerge if they are not
needed. I like this statement as it points out
what our programs need to do set up need
situations to make the child make requests,
make the child more independent, make the
child see the value of social interaction.

There were a number of good papers on
managing verbal stims and none of them had
an easy solution, other than interrupting and
rewarding the opposite behaviour. It is a
difficult task and there is no magic, as the
child finds this behaviour more rewarding than
much of what we have to offer. A high level of
social interaction during a teaching session
also helped reduced self stimulation levels.
Certainly pressure vests, though expensive,
do not work when data is taken with precision
(and the presenter now has four second hand
vests to sell on e-bay).

There were papers on reinforcement and on
modelling as a form of teaching. But we may
talk about these later.

Last but not least I was impressed by a paper
by Jesus Rosales-Ruiz of the University of
North Texas. He pointed out that we tend to
look at the Discriminative Stimulus (Sd) as a
discrete entity and an instruction we give, but
to a child the total situation, the environment
and all present at the time including the childs
own reactions will become amalgamated into
one confusing Sd. This is a very plausible
explanation for the reluctance and fear of
failure we see in children when we know they
can achieve. What experiences are they
remembering in association with the simple
task we present? This is the most powerful
argument for errorless learning and time
delayed prompting possible. It also suggests
that hand over hand prompting, which can be
quite aversive to a child with ASD, is not a
good teaching tool. How did we get that child
to the therapy session and to the table on the
first occasion? Maybe taking more time and
waiting for the child to come independently,
enticing the child into a closer interaction is a
better way and will save much time later. This
is going to be central to our training of
therapists in the future.

Jura Tender
CLOSER TO HOME

ABIA (Autism Behavioural Intervention
Association) [ not to be confused with ABAI
(Association for Behavior Analysis
International)] will be holding its third biennial
conference at Monash University, Caufield
Campus in Melbourne on Saturday April 18
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2015.

Previous conferences have been well
worthwhile, and valuable for parents and
professionals alike. Even worth the interstate
trip if you are not from Victoria.

Details are:
Friday 17 April 2015
Masterclass for ABA Professionals

Saturday 18 April 2015

Main Conference Day (for all delegates)
For further conference information please
contact:
info@abia.net.au | 03 9830 0677
Registrations open soon.

CONGRATULATIONS.

To: Sarah Charlton on the birth of her
daughter, Estee Sienna Finlay in June.


NEW ZEALAND NEWS

Wellington has had a sudden explosion of
new families starting programs in the past
couple of months, keeping Program Manager
Susan Farmer very busy!

We welcome our new Kiwi Client families, and
hope they enjoy reading Rhubarb.

For more NZ news, see below in Parent
Contributions section.


SINGAPORE NEWS

ISADDs offices in Singapore have recently
been redecorated with light-coloured painted
walls, which has given the whole place a
brighter, more welcoming feel.

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After many frustrating delays, ISADD in
Singapore has a new web-site up and
running. It seems this was much needed, as
since it came online, enquiries about our
services have doubled! The web address
remains the same, www.isadd.com


PARENT CONTRIBUTION
(A Success Story)

Thank you, Samantha, for sharing this
wonderful story Ed.

LEWIES STORY


My name is Samantha Clark and I have a son,
Lewis who was diagnosed with High
Functioning Autism at the age of 3yrs back in
1994. He is my second son; he has an older
brother, Josh (born 91) and a younger sister,
Phoebe (98). I didnt know much about
Autism. My immediate imagination went to a
child who would be in his own little world
rocking all day, and of course Rain Man the
movie, so my thoughts went to Lewie being
completely silent, but he would be really
clever with figures and Maths! This wasnt the
future I had hoped for him. We had moved to
Melbourne for work and all our family were in
Perth, so I was feeling quite distressed and
alone.


Lewis did not communicate with us, no eye
contact and no pointing or playing. Just
spinning things or lining them up. He also did
not like anybody to cuddle him (except for me)
and he didnt like certain textures in his mouth.
He also became quite distressed when we
took him into large shopping complexes or
turned on the radio in the car. He would hold
his ears and scream. He also had an
amazing memory for directions, especially in
the car. Goodness help us if we ever went a
different route home!! He also liked to line
things up.anything! When stressed he
flapped his arms.

So I read - there was no internet back then,
just a library full of outdated books. Also back
then there were not a lot of children around
with this diagnosis. People kept telling me he
was just developmentally delayed.
Unfortunately the first book I read told me that
my son was most likely Autistic because I had
not bonded with him as a baby, and as a
result he would most likely not communicate
with us. Great decision was to stop reading
and try and find some help. We started
Speech Therapy immediately, also learning
Makaton (sign language).

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I attended group meetings and was also told
that he would have limited speech and
communication with us, but to be hopeful,
there was a chance he could get to a point
where he could get a job with Qantas sorting
cutlery. I was also told that we should
consider putting Lewis into an Autistic School.
Well, that really got me fired up to keep
searching for something else.

We found the Elwyn Morey Centre, Monash
University, which had the most wonderful
people, they helped Lewie socialise with other
kids. They were also an amazing support for
me as a mother trying to find my son. Lewie
attended once a week. I would park my car at
the back of the Uni Car Park and Lewis would
have to count every car, therefore taking me
20 minutes to get into the building. Thank
goodness they gave me a park right in front of
the building. Lewis was not very happy with
that decision.

With Lewis attending Elwyn Morey every week
and Speech Therapy once a week and also
having interaction with his brother, we heard
through word of mouth about Auditory
Integration Therapy (AIT) to help with Lewiss
sensory problems. This was therapy for two
weeks. To our delight and relief this was
amazing and helped Lewie so much.

We were then moved back to Perth, which
was great as we had also heard by word of
mouth about the LOVAAS method and people
talking about Applied Behavioral Analysis
(ABA). I got in contact with ISADD, I met
Jenny Bolland as soon as we arrived and had
settled in.

My mum, in-laws and myself decided to learn
how to do ABA and, with the guidance of
Jenny, started our amazing adventure of
helping Lewie to fit into our world. Hardest
decision was - how many hours do we do? Do
we keep him in a normal routine of kinder etc?
After much thought we decided to do 13 -16
hours a week as well as Lewie attending
Kinder (with an Aide), and a social group at
the Autism Association and continue Speech
Therapy. This was an intense three years;
thank goodness we always had Jenny to
guide and support us!


I covered my house with labels, as Lewie was
a visual learner; things seemed to stick in his
head if I could show him the words. We also
did Social Stories and found the Sentence
Master Computer program, which helped a lot,
even if it did give him an American accent!!

Lewie started to give us words and words
turned into sentences. Because we were only
doing 13/16hrs of ABA, I turned everything
that I did with Lewie into a lesson e.g. bath
time was a lesson of Above/Below, Float/Sink.
Breakfast was encouraging Lewie to ask for a
spoon after I had given him a fork.

Lewie repeated 4yr old kinder and then
attended Pioneer Village School in Armadale,
which was perfect for him, a beautiful small
country like atmosphere with amazing
teachers and of course his aide.

Lewie was improving all the time, yes we did
have tantrums and I was exhausted from
staying up all night cutting pictures from
magazines for lessons and just general mum-
stuff. Just when things would be going along
smoothly something random would happen,
like accidentally getting him to school late.
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Lewie would not go into class because he
wanted to line up first. Obviously the line had
gone in. There was no way he was going into
that classroom without a major fight! Then
when we got him into the classroom he spent
most of the day under the desk!! So Jenny
told me to get him to school late at least once
a week! Boy was that a yucky day of the
week. But it didnt take him long to realise that
it wasnt a big deal to be late. Praise the Lord
the day he went into that classroom without a
problem and he had a good day!

When my husband got a transfer back to
Geelong, Victoria, it was a massive decision
whether Lewie would cope or not. Do we take
the risk after doing all that work? What if he
goes backwards or worse forgets everything
we have done. We also lose our support
network of our family and friendsand
Jenny!


We decided to go for it; if it didnt work we
would turn around and come home.

Lewie was managing to fit into mainstream
school, yes still with an aid but only up until
grade 3. Socialising was always hard, as a
mother seeing him not get invited to birthday
parties was probably one of the hardest things
Ive ever experienced! Just someone give him
a bloody invite!! And yep, he did get 3!! Not
much comfort when he had a sister going to
birthday parties every couple of weeks!

In Geelong I found a support group for me and
a beautiful child psychologist, Maree
Stephens for Lewie. I found Richard
Eisenmajer, who diagnosed Lewie as
Aspergers. I was still doing social stories and
using the ABA in many ways at home and
when we went out. We also found The
Treehouse (a social group for teens. This was
great!



Now for the best part of this story.

Lewie finished year 12, in that time, he was in
the school Wind Symphony Orchestra playing
Euphonium (small tuba) and travelled to
Hawaii for competition. He is now 21 and is
in his third year at Deakin University in
Melbourne doing a Bachelor of Creative Arts
(Motion Capture/ Animation) and living on
Campus.



As a mother, back when he was diagnosed,
all I wanted to know was what his future would
be like. Would he be able to attend
mainstream school? YES HE DID! Would
he have a girlfriend? YES! Would he be able
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to drive?..YES! Would he be able to live a
normal life.YES, YES and YES!





I am not saying this was an easy road. But if
you put in the effort the rewards are amazing.
I personally feel that if we had not done the
ABA and incorporating into everyday life, that
Lewie would not be where he is today. He
inspires me every day; he has the gentlest
soul and doesnt let anything stand in his way.
He is off to Japan in November!! We are so
proud of him!


FROM NEW ZEALAND

(Another Success Story)

Under the headline Student Shines on Air,
the Cook Strait News, a newspaper in
Wellington, reported on 12-year-old Nialls
debut on his schools radio station. The story
was in part about the fact that Lyall Bay
School has had its own radio station since
2008, but it also highlighted the competence
with which Niall, who has autism, was able to
broadcast his story which he had written about
a special day he had had at school. (See
picture). Niall has been a client of ISADD for
the past eight years.


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ISADD Lietuva NEWS.

In Lithuania, client numbers are increasing
rapidly, with a consequent increase in the size
of the organization. This has necessitated the
appointment of a dedicated Coordinator,
Jurgita Race, to take some of the workload
away from Case Manager Aiste Galectkaite,
who had been doing both Case Management
and Coordination.

During her recent visit, Jura attended two
special celebrations: one was a parent-
professional social event organized by Kitoks
Vykas a celebration of Midsummer (St
Johns Day), and the second a celebration of
ISADDs tenth anniversary in Lithuania.

Pictures of both events below.

Also while in the country, Jura was
interviewed by Vilniuss major newspaper, and
was featured over two pages in the papers
Weekend Magazine section.































HUMOUR SECTION

Financial Planning explained by an
Irishman

Paddy bought a donkey from a farmer for
100.
The farmer agreed to deliver the donkey the
next day.
In the morning he drove up and said, Sorry
son, but I have some bad news. The donkeys
died.
Paddy replied, Well just give me my money
back then.
The farmer said, Cant do that. Ive already
spent it.
Paddy said, OK then, just bring me the dead
donkey
The farmer asked, What are you going to do
with him?
Paddy said, Im going to raffle him off.
The farmer said, You cant raffle a dead
donkey!
Paddy said, Sure I can. Watch me. I just
wont tell anybody hes dead.
A month later, the farmer met up with Paddy
and asked, What happened with that dead
donkey?
Paddy said, I raffled him off. I sold 500 tickets
at 2 each and made a profit of 898
The farmer said, Didnt anyone complain?
Paddy said, Just the guy who won. So I gave
him his 2 back.

Disclosure: The Editor of Rhubarb is Irish.
Disclaimer: The advice given above is general
in nature, and should not be acted upon
without first consulting your financial planner.

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When asked what parenting is all about, most will immediately say love. But if we begin to look
deeper it is more than that, it is the preparation of a new human being for life. Where ASD is
concerned, the task becomes more difficult. It looks so difficult that many parents pass it all on to
the professionals. Skills will be taught, but without your involvement, they will not be imbedded
into life routines. It may come as a surprise that the very skills that will make your child easy to live
with are the skills that your child needs for independence.

This workshop will look at how parents can purposefully select and target skills to teach while
interacting with their child and getting on with daily chores; skills which will make family life easier
and the childs future more independent. We will plan what you can currently achieve within your
daily routine. We will look for good ideas and short cuts.




Presenter Presenter Presenter Presenter: Jura Tender, Principal Clinical Psychologist

When When When When: Monday, 8
th
September 2014

Where Where Where Where: ISADD, 50 Angove Street, North Perth, WA

Time Time Time Time: 6.30 8.00 p.m.




RSVP: Linda 9227 6888 or isaddevents@gmail.com





















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Photo Corner


Celebrating Midsummer the pagan way.

Lithuanian personnel at 10 year celebration.

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ISADD Lithuania's 10-year birthday cake

What a candle!