OTARC Autism app wins coveted National iAward

From UniNews, 7th September 2016

The free app – called ASDetect – won the Project of the Year iAward in the Research and Development Category. Since its launch in February 2016, ASDetect has had more than  10,000 downloads,  almost 6000 registrations and  4,000 assessments undertaken.

The iAwards are Australia’s leading awards program for innovation in the digital economy. They honour both companies at the cutting edge of technology innovation as well as leading professionals in the sector. The judges identified ASDetect as an outstanding example of both.

The app uses questions drawn from breakthrough research at La Trobe’s Olga Tennison Autism Research Centre (OTARC), undertaken by Research Fellow Dr Josephine Barbaro. It gives parents access to video footage from actual clinical assessments and clearly demonstrates the context and expected key behaviours of children at each age.

An estimated 1 in 50 children have an Autism Spectrum Disorder (ASD). Research by OTARC shows that the majority of these children are not diagnosed until they are over four years old, more than two years after they can be reliably diagnosed and receive life-changing intervention.

Salesforce developed the ASDetect app on a pro bono basis as part of the company’s 1-1-1 integrated philanthropy model, where the company donates 1% of its employee’s time, its products and its resources to support the not-for-profit sector. A team of Salesforce engineers, designers and developers volunteered their time to build the app on the Salesforce platform.

OTARC Director Professor Cheryl Dissanayake said the award was wonderful recognition of the ground breaking early autism detection work being done at La Trobe. ‘In partnering with Salesforce – our early identification methodology – is now available to parents around the globe who may have concerns about their very young children’s development. The app – while not a diagnosis can provide a crucial opportunity for prompt professional follow up – and maximise a child’s learning and developmental opportunities.’

Dan Bognar, Senior Vice President, Asia Pacific at Salesforce said, “We are thrilled to win this prestigious Australian award, it is a huge testament to OTARC’s vision and the innovation that only Salesforce can deliver. The award highlights the disruptive power of cloud and mobile technology to unlock groundbreaking research and create a positive social impact globally. We thank our team of Salesforce volunteers for their teamwork and dedication in bringing this incredible initiative to life – it has touched so many children’s lives already.’

A guide for how to choose therapy for a child with autism

Researcher with child

Andrew Whitehouse, University of Western Australia

One of the first and most important choices parents and caregivers make after a child’s diagnosis of autism is which therapy will be most suitable for their son or daughter.

Unfortunately, this choice also comes at just about the least opportune time. During a time of considerable upheaval, families are introduced to a new and vast world populated with previously unheard of therapies, programs, acronyms and health professionals. At a time when a tired and worried brain needs clarity the most, it must appear as it’s never been further away.

The good news is that this confusion is well-recognised, and many jurisdictions have put in place services and mechanisms to help guide families at the point of diagnosis. For example, the Autism Advisor scheme in each state of Australia has been specifically designed to inform parents of their options at the point of diagnosis. However, while these services can prove to be an enormous help, the choice about which therapy may suit their child will reoccur throughout their lives, and so it is very important for families to develop their own method to help make these decisions.

It is important to say loudly, clearly and repeatedly that there is no ‘one size fits all’ approach for matching a child to a therapy. This is one of the great scientific goals for autism research, and we have reason to be optimistic for significant progress in this area over the next two decades. However, there are overarching principles that can be used as a template to assist with these challenging decisions.

1. Give yourself a break

No one is born knowing how to choose the most suitable therapy for a child with autism. This knowledge is only acquired through experience, and this takes time. Sometimes you will make poor choices, and it is important to be gentle on yourself during these times. Sometimes you will make great choices, and it is important to congratulate yourself on those occasions. There is nothing like a reflection on your previous stumblings to realise how far you have actually come.

Amongst the most important things you can do for your family is to recruit a team of supporters; people who can and will remind you of your inexperience, your progression and that this process is harder than you give it credit for.

I like to work on the ‘five finger’ principle. Each person in your support team represents one finger. In a time of need, you first turn to the person represented by your thumb. If you can’t get hold of them, then you turn to the person represented by your index finger, and so on. By the time you get to your pinkie, you will have found someone who will be able to listen, baby-sit, cook dinner, or simply tell you that you’re wonderful.

2. Goal-setting

An important step in any process is to define the issue you’re addressing. It is quite simple: if you don’t know what you’re looking for, you can’t find it. You must understand what you and your child would like to achieve through therapy, before you can find a therapy that fits that need.

Many health professionals will guide you through a goal-setting process. If they don’t, then insist that they do. When formulating goals, first think broadly (e.g., ‘I want my child to learn to talk’), and then think of clear and defined outcomes that will help you along that path (e.g., ‘I want my child to use verbal language to request food and drink’).

I like to picture a staircase of 10 steps. We wouldn’t expect anyone to leap the whole staircase in one bound, but taking the steps one at a time – sometimes, with one step backwards – will get us to our destination.

3. Understand the therapy

For better or worse, there is a wide choice of therapies offered for autism. To become an expert in each and every one of these therapies is impossible, even for people who dedicate their professional lives to the study of autism. Nevertheless, when you have narrowed down your choice to a handful of therapy programs, it is important that you do have an understanding of what is being offered.

Some simple questions that you can ask your health professional are:
• What is the therapy? You need to know what this therapy actually involves.
• What is the rationale of the therapy? You need to know why this therapy may be effective for your child.
• Is the therapy safe? You need to know that this therapy will not harm your child.
• Is the therapy effective? You need to know if there is scientific evidence that this therapy can lead to improvements

If the answers to these questions satisfy you, then weigh up the positives and negatives of this information. Understand the time requirements, the financial cost, and the implications of these for your family life. Always be mindful of over-inflated claims, which are almost certainly too good to be true. Some simple warning signs include statements of a ‘cure’, an apparent ‘one size fits all’ approach to a range of conditions, excessive scientific jargon, and disproportionately high fees.

With all of this information in your back pocket, it is time to determine the fit for you and your family. The analogy that I come back to time and again is dating: a person may be absolutely perfect, but they have to be perfect for you. The same goes for therapies and therapists.

4. Review

You can only ever make the best decision with the information you have at the time. But it is critical to remember that this information will change over time. What suited your child and family a year ago may not apply now that you are 12 months down the track. Review your child’s progress, review the positives and negatives of the therapeutic approach, and review your family’s circumstances. Evaluate the fit and make a choice.

Whether you feel it or not, you have become an expert in autism. Indeed, the only people more expert than you are individuals with autism themselves. Although choosing interventions is currently an imperfect science, you and your family are in control of the process. By having a clear understanding of your goals for therapy, as well as the positives and negatives about what any give therapy offers, you are reducing to negligible the role that luck plays in the process.

Talk, question, explore and plan. And always remember that you know more than you think you do.
You can follow more of Andrew’s updates here.

The Conversation

Andrew Whitehouse, Winthrop Professor, Telethon Kids Institute, University of Western Australia

This article was originally published on The Conversation. Read the original article.

Volunteers Wanted During the School Holidays

Research with a child

 

 

 

 

 

 

OTARC needs the help of children, teenagers and/or adults (with or without ASD) to volunteer for a practice assessment, to allow clinicians on the ADOS-2 course (Autism Diagnostic Observation Schedule) to practice their new skills under supervision.  In thanks for your help, we can provide a short assessment report for children (who have an ASD diagnosis), and a $20 Coles-Myer gift card.

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How do people process and recognise faces?

Face Recognition Pic

 

Face Recognition

Previous research suggests that people on the Autism Spectrum may have difficultly recognising faces, but the evidence is far from conclusive, with many individuals actually showing good to exceptional skills.  It is hoped that this study will help us to understand more about face recognition in people with and without a diagnosis of Autism. Continue reading

How was your day?

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The Olga Tennison Autism Research Centre (OTARC), University of Melbourne and the Cooperative Research Centre for Living with Autism are running a new research study, investigating how children with ASD speak about their day at school.  “How was your day?” is looking in particular at the conversations that take place in the home.

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Parent input vital to improving research

Children and CRC Logo

The Autism CRC’s pioneering Australian Autism Biobank (AAB) depends on the ongoing involvement of parents for its success.

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Daniel’s Story: My Autism is a Gift

On 29th May OTARC received an email from Daniel Pugh, who wanted to share his story with those who may be interested.

Daniel’s Story provides insight into the struggles faced daily by students on the spectrum. Here is what he said.

Daniel Pugh

Daniel Pugh

I was happy to be made aware that the Olga Tennison Autism Research Centre exists. I discovered it purely by chance upon reading my local newspaper, the Warrnambool Standard, an affiliate of Fairfax Media.  I read an article about a young boy whose story is not dissimilar to my own, his name is Lucas Whittam. I saw mention of your institute in a quote from Professor Cheryl Dissanayake, and wanted to share my own experiences in what was a very turbulent childhood.

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Ask an Autism researcher – Is it possible to teach adults with autism to speak?

mouth

Thank you very much for submitting this question. Unfortunately, the simple answer is that we don’t know because there is no research evidence that tells us one way or the other. There are reports of individuals which indicate that it may be possible (see for example http://www.theguardian.com/society/2015/apr/29/unlock-secrets-autism-national-project), but what works for one individual may not work for another. Because of that we cannot make any predictions about particular individuals.  However, it is important not to assume anything. Experiences through work, reading of the research literature, and listening to the personal stories of people with autism and their families lead us to think that we can’t predict what individual people with autism can or cannot learn, and we shouldn’t give up trying to help them to learn skills. We shouldn’t be surprised by surprises.
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Director’s Report – Winter 2016

Mrs Olga Tennison received a sloppy kiss from Talwin, the seal

Mrs Olga Tennison received a sloppy kiss from Talwin, the seal, at a recent visit to Melbourne Zoo.

Welcome to the Winter Edition of Another Piece!

We have farewelled a key staff member at OTARC, our Senior Advisor of Operations and Projects, Mr Wojciech Nadachowski. Wojciech left in late March to begin working at the Autism CRC as Chief Operations Officer. I would like to acknowledge the energy and expertise Woj brought to his role at OTARC, and all he has generously done for us over the last four years. His contributions will continue to keep us in good stead!

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Farewell to Peter Johansen

Peter with OTARC staff

Peter (fifth from the left) at a farewell lunch with OTARC staff.

The staff at OTARC recently held a farewell lunch for Peter Johansen.

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