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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, it’s 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 isn’t 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 it’s 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. Let’s 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/autism2014survey 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 year’s 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 year’s 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 mother’s face is not reflecting bub’s, 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 DVD’s 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 mother’s 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 neuro–developmental 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 child’s 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 18th 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 ISADD’s 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.

LEWIE’S 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 didn’t 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 wasn’t 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 didn’t 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 Lewis’s 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 didn’t take him long to realise that it wasn’t 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 friends……and Jenny!

We decided to go for it; if it didn’t 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 I’ve 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 Asperger’s. 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 doesn’t 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 Niall’s debut on his school’s 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 John’s Day), and the second a celebration of ISADD’s tenth anniversary in Lithuania. Pictures of both events below. Also while in the country, Jura was interviewed by Vilnius’s major newspaper, and was featured over two pages in the paper’s “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 donkey’s died.’ Paddy replied, ‘Well just give me my money back then.’ The farmer said, ‘Can’t do that. I’ve 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, ‘I’m going to raffle him off.’ The farmer said, ‘You can’t raffle a dead donkey!’ Paddy said, ‘Sure I can. Watch me. I just won’t tell anybody he’s 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, ‘Didn’t 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 child’s future more independent. We will plan what you can currently achieve within your daily routine. We will look for good ideas and short cuts.

PresenterPresenterPresenterPresenter: Jura Tender, Principal Clinical Psychologist

WhenWhenWhenWhen: Monday, 8 th September 2014

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

TimeTimeTimeTime: 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!