GET INVOLVED
If you are a family or individual affected by an Autism Spectrum Disorder you can make a valuable contribution to unravelling the mysteries of autism. One of the ways you can do this is by becoming involved in research into this complex body of disorders. Indeed, many families ask 'what research is underway into autism?'
There is a lot of research into Autism Spectrum Disorders here in Victoria, and elsewhere in Australia and overseas. One key researcher said recently, "it seems every completed research project asks more questions than it answers."
Current research projects recruiting participants
Complete our Research Participant Register
What is research?
Research takes many forms. It may be a large, international project seeking to establish a cause, or locate a gene, or trial a specific treatment. It may be part of a research program that incorporates smaller student projects such as a twelve-month undergraduate project or a three-year doctoral project. Research projects can cover different areas including medical issues, education, causes and other areas related to child and family needs and functioning.
Research findings are usually presented at conferences and ultimately published in peer reviewed scientific, medical and educational journals. Some research findings feature in the media and initiate considerable discussion and debate. An example would be the recent debate about the MMR vaccination and autism. Others remain unpublished for decades - such as the work of Hans Asperger in the 1940's.
An often-overlooked outcome of honours and post graduate student research is its important role in developing the next generation of professionals. More and more students are becoming interested in Autism Spectrum Disorder, and they carry this interest and expertise into their working life.
Why am I important?
The most important component of Autism Spectrum Disorder research is you - the families and individuals. Without your participation there can be no research findings, and thus no change in our scientific knowledge of these conditions.
Please consider being part of the Autism Victoria Research Participant Register. You only need provide basic information about yourself and/or your family. The register is kept securely by Autism Victoria and is not issued to any other organisation. A researcher will be able to request a listing of subjects defined by the following criteria:
- Date of birth
- Postcode
- Specific Diagnosis
- Verbal/non-verbal
- Level of intellectual disability
- Gender
- Number of siblings with an Autism Spectrum Disorder
- Number of siblings not affected by an Autism Spectrum Disorder
This is an email-based list. Sometimes we may need to contact you to verify details, which is why we need your personal details. However, only your email address will be made available to bone fide researchers. When a researcher contacts you, s/he will explain the study briefly. You are under no obligation to participate in the study unless you wish to do so. You may remove your details from the list whenever you wish by sending an email to kym.phillips@autismvictoria.org.au. To register your interest in participating in research projects, click here.
Current research projects recruiting participants
Understanding the support needs of university and TAFE students with Autism Spectrum Disorders
Coping skills for teenagers using a mobile phone program
Conversations on Autism: Stories on Independent Living and Parental Experiences
Improving social skills for young people with autism spectrum disorders
Social Anxiety in Asperger Syndrome
A new natural treatment for Autism
Stress and coping in parents of autistic children
Children's sleep patterns and psychological wellbeing
Evaluation of nutrition educational resources about managing eating issues in children with Autism Spectrum Disorder (ASD)
In the past three years, we have conducted a study investigating the nutritional status and eating behaviours of children with Asperger Syndrome in Queensland. This study involved a collaboration of dietitians (Dr. Melinda White & Ms. Shu Ong), occupational therapist (Prof. Sylvia Rodger) and food scientist (Dr. Bruce D’Arcy), and also supports from the caregivers of children with Asperger Syndrome and of typically developing children.
From the experiences shared by previous families and health professionals, we have currently designed a booklet titled: “Managing eating issues in children with Asperger Syndrome: Parents’ and Professionals’ suggestions”. Now, we’d like to hear more feedback from caregivers and health professionals, who are working with children with ASD and/or children with poor eating behaviours, on the usefulness and relevancy of our designed resources. Click here for a flyer.
Your feedback is important to us. This allows us to further implement the resources so that the practical knowledge could be shared with the community. No additional cost will be charged to the consumers of the resources in future.
If you’d like to be our first reader and are willing to share your comments, please email Shu Ong at s.ong@uq.edu.au or phone 0432 593 459.
Understanding the support needs of university and TAFE students with Autism Spectrum Disorders
University and TAFE life can be challenging and stressful for any student. The Olga Tennison Autism Research Centre, La Trobe University, is currently running a project aiming to understand the support needs of tertiary students with Autism Spectrum Disorders.
This project is funded by Department of Human Services (Vic) and will result in recommendations for universities and TAFEs based on the feedback provided by students, their families, and teachers.
Part of the project involves students, family members, and teachers completing a questionnaire. There are three types of questionnaires targeting:
Students: Students diagnosed with Autism Spectrum Disorders currently enrolled in TAFE or University.
Click here for the questionnaire.
Family members: Parents or close family members of these tertiary students.
Click here for the questionnaire.
University or TAFE staff members: Teachers or administrative staff who have worked or currently work with students with Autism Spectrum Disorders.
Click here for the questionnaire.
If you are a student, family member or staff, it will be greatly appreciated if you can complete the questionnaire. All responses are anonymous and instructions are on the front page of each questionnaire.
Please contact Ru on the details below if you have any questions.
Ru Ying Cai
Phone (03) 9479 3271
Email: r.cai@latrobe.edu.au
Coping skills for teenagers using a mobile phone program
The Monash University Centre for Developmental Psychiatry and Psychology is currently conducting research to investigate the mood and coping skills of young people aged 12 to 18 years with high-functioning autism and Asperger’s disorder. The research involves the young people trialling a mobile phone program that assesses these areas for two weeks and completion of some questionnaires by both the young people and a parent/guardian. Participants will be lent a mobile phone for two weeks and will be given a SIM card with $20 credit that they will be able to keep.
For more information about being involved in this research project, please contact Angela Khor on 9902 4565 or via email: angela.khor@monash.edu.
This research is being conducted under the supervision of Dr Kylie Gray (Monash University), Dr Glenn Melvin (Monash University) and Dr Sophie Reid (Murdoch Childrens Research Institute).
Electrophysiological, eye–tracking, and behavioural markers of Autism Spectrum Disorder in young infants.
Dr Jordy Kaufman and his research team at the Swinburne BabyLab are currently inviting individuals to participate in a project that will help us learn how Autism Spectrum Disorders develop in infancy and what possible signs there are in infant brain activity.
What does participation involve?
Participation in this study is easy and is designed to be fun for the baby and parent. We ask participants to attend up to five research sessions when your child is 3-4 months, 7-8 months, 10-11 months, 17-18 months and 24 months. You may choose to participate in one or multiple visits; participation in one visit does not commit you to participate in subsequent visits. Each visit lasts no longer than approximately 90 minutes.
During these visits we will measure your baby’s brain activity while he or she watches short video clips and reaches for toys. We measure brain activity with an infant-sized “Sensor Net” that is fitted on your baby’s head. The net is designed to be safe and comfortable. Just like a thermometer would measure temperature, the net simply measures the naturally occurring activity coming from your baby’s brain, and nothing comes out of it. During the experiment, we will show your baby a child-friendly video that is comprised of inoffensive material, such as different animals, colours, shapes, patterns, and we will also video-record your baby, so we can match baby’s behaviour with his/her brain activities. When your child is 2 to 3 years old, we will contact you for a brief phone interview to ask if your child has received a diagnosis of ASD from a medical professional.
We will also ask you to fill out a demographic questionnaire on behalf of your child and two self-report questionnaires for yourself, which will not be used for diagnostic purposes.
If you have any questions or would like to register your interest in our study please do not hesitate to call us: 9214 8822, email us: babylab@swin.edu.au or please visit our website for more information and to register via the online form: www.babylab.org
Conversations on Autism: Stories of Independent Living and Parental Experiences
Dr Michael Crowhurst (School of Education RMIT), Emma Donaldson (Autism Victoria), Dr Jude Ocean (School of Education RMIT ) and Trevor Skerry (Disability Studies RMIT) are conducting a study and seeking participants. The study is in two parts. In the first part we are aiming to interview 8 people with an ASD who are living independently in the community between the ages of 18-30. We are interested to hear about your week. In the second part we are aiming to interview the parents of a different group of young people with an ASD who are living independently in the community. We are interested to hear about your week. We are hoping to interview 8 young people and 8 pairs of parents. The interviews will last for a total of 30-60 minutes each. The interviews will be taped and transcribed. We will also ask participants to take a series of photographs that communicate something about their lives. We will produce resources that will be used to raise awareness.
If you would like further information about being involved in this project please click here or contact Ms. Grace Miano – grace.miano@autismvictoria.org.au 03 9657 1613.
Improving social skills for young people with autism spectrum disorders
The Monash University Centre for Developmental Psychiatry and Psychology are currently conducting research to evaluate a new treatment approach for people with autism and Asperger’s Disorder that examines whether oxytocins in the form of a nasal spray can improve social functioning and emotion perception for males aged between 12 and 18 years. This trial provides an assessment and then eight weeks of treatment with either oxytocin or a placebo.
For more information about being involved in this research project please contact Dr Kylie Gray, Professor Bruce Tonge, or Dr Nicole Rinehart on (03) 9594 1307 or email: autismcares.spppm@med.monash.edu.au
Social Anxiety in Asperger Syndrome
Dr David Hamilton and Shae Gaskin from the School of Psychology at Australian Catholic University are conducting a study looking at the experience of social anxiety in adolescents diagnosed with Asperger syndrome compared with typically-developing adolescents. We hope that the information we gain will assist professionals in treating social anxiety by distinguishing which contributing factors to focus on when working with both groups of adolescents.
We are seeking both adolescents diagnosed with Asperger syndrome and typically-developing adolescents who would be willing to participate in the study. Consent for their participation will be requested from their parent/guardian. Participants will be asked to complete an online questionnaire which will take approximately 30 minutes. Data will be de-identified by the use of codes and measures will be taken to ensure security of data.
If you like to be involved please contact:
Dr David Hamilton.
Phone +61(03) 9953 3118
Email: david.hamilton@acu.edu.au
Living with High Functioning Autism Spectrum Disorder: The experience of
teenagers with High Functioning ASD
This project will examine the following areas:
-The lived experiences of teenagers with High Functioning Autism their parents and siblings, including perceptions of stigma and physical and emotional health determinants.
-The relationship between siblings.
-The meaning of motherhood and fatherhood among mothers and fathers of teenagers with High Functioning Autism Spectrum Disorder.
- How families deal with the experiences of living with High Functioning Autism Spectrum Disorder.
The parents participating in this study must have a child between the ages of 13-18 years who has been diagnosed with High Functioning Autism or Aspergers syndrome. Parents are required to be involved in a focus group discussion and a one on one interview. They will also be asked to fill in a diary of their day to day experiences over two week period.
The children participating must be between the ages of 13-18 years and must be diagnosed with High Functioning Autism or Aspergers syndrome, or be a sibling of a child with the above condition. The children will be asked to participate in a drawing method and a one on one interview, siblings to also participate in a focus group.
The data collection process is anticipated to take place between April and December 2011.
If you are willing to be a part of this project or require further information please email Jessica Gill at jmgill@students.latrobe.edu.au or phone 0439 324 295.
A New Natural Treatment for Autism
We would like to study the benefits of adding an antioxidant to the usual treatment for autism. It is believed that in autism there may be an abnormality in the metabolism, or oxidation, of certain chemicals resulting in interference in normal brain function. There is evidence that antioxidant treatment may improve some of the symptoms of this disorder.
We will be using a substance called N-acetyl-cysteine that is found naturally in proteins such as meat and fish and also in green leafy vegetables. It is approved by The Australian Therapeutic Goods Administration.
Children aged 3-10 who have been diagnosed with autism are eligible for this trial. The trial period will last 6 months, with follow-up visits 6 and 12 months later. The trial will not involve any costs and children will continue their usual treatment.
This trial is a joint venture between Barwon Health, the University of Melbourne and the Australian Rotary Health Fund. Persons wishing to take part in the trial can obtain more information from Kristi Villagonzalo on (03) 5226 7428 or via email on nactrials@barwonhealth.org.au.
This research is being conducted under the supervision of Prof Michael Berk, Dr Seetal Dodd and Dr Olivia Dean (University of Melbourne) and Dr Kylie Gray (Monash University).
Repetitive behaviours are a common feature of autism and can cause problems at home, school and interaction with society. Fluoxetine is an SSRI medication that is commonly prescribed for OCD and also ‘off label’ for autistic patients with repetitive behaviours. We are conducting a multi-site double-blinded placebo controlled trial of fluoxetine, and hope to recruit ~150 subjects. The trial will include an initial assessment and several phone interviews to assess treatment and tolerance during medication. There will be a final assessment after 16 weeks of treatment. We seek diagnosed ASD participants aged 8 to 18 with troublesome restricted, repetitive or stereotyped behaviours.
For more details on the study, click here, or contact Steven Kloprogge, Clinical Trials Coordinator, Murdoch Children's Research Institute steven.kloprogge@mcri.edu.au
Are you a caregiver of a child or adult with an Autism Spectrum Disorder and the person you care for routinely takes medication?
Are you an individual with an Autism Spectrum Disorder who routinely takes medication?
We are from Deakin University and we are conducting a study about the use of medication by individuals with an Autism Spectrum Disorder. We need your help. We want to find out about the type of medication and the reasons for its prescription, as well as your perspectives about its use. It is important that we gain a greater understanding about medication use so that we can make recommendations that may improve practice.
We would very much appreciate you taking the time to complete our survey and to forward this message to other people you may know who can complete the survey. If you agree to participate, you will be asked to complete a questionnaire that will take approximately 20 minutes. Your involvement is voluntary and your responses are completely anonymous. If you would like to participate in this important study, you can contact me via email for a paper version (with a reply paid envelope for return to us), or you can go directly to the survey at: http://www.deakin.edu.au/psychology/research/autismstudy
A copy of group findings will be made available to participants upon request.
Stress and coping in parents of autistic children
This research project, conducted by Joshua Whelan and Dr David Hamilton, is investigating how parents deal with stress in different types of situations. Parents of children diagnosed with autism spectrum disorder are being sought for participation. Participants will be tested in a single online session which should last about half an hour. The online questionnaire includes a number of demographic questions (such as your age and gender), items measuring current emotional functioning, and items measuring how you deal with certain stressful situations.
We hope your participation in the research will contribute to what we know about the ways in which parents of autistic children deal with stress, and that this may assist in the development of services which are more sensitive to the needs of parents and their children.
If you have any questions about the project, before or after participating, please email Dr David Hamilton at david.hamilton@acu.edu.au in the School of Psychology at the Australian Catholic University. If you wish to participate please go to www.psychdata.com/s.asp?SID=135928.
Children’s sleep patterns and psychological wellbeing
This study has now been completed.
A new study is underway at the Olga Tennison Autism Research Centre at La Trobe University examining overall growth in boys with autism, its relationship to hormone levels, bone and ligament development, and degree and form of autistic behaviours. This growth data will be used to identify possible subgroups within the autism spectrum.
Boys who have been diagnosed with an Autism Spectrum Disorder aged between 4 to 16 years are invited to participate. We are also currently recruiting boys with typical development to serve as control participants.
The testing will take place over three sessions (one session every six months) at the Olga Tennison Autism Research Centre at La Trobe University, Bundoora. The results of the developmental assessment of participants with an Autism Spectrum Disorder undertaken as part of the study will be available to parents free of charge.
If you and your child would like to participate or if you wish to obtain further information about this research, please contact Ms Cherie Green (Tel: 03 9479 3271; email: c.green@latrobe.edu.au or Dr Cheryl Dissanayake at the Olga Tennison Autism Research Centre, La Trobe University, Bundoora, 3083 (Tel: 03 9479 1162; email: c.dissanayake@latrobe.edu.au).
Research Participant Register Form
A parent or primary carer, or the person with an Autism Spectrum Disorder (if possible) can complete this form. Please complete a separate form for each child/adult with an Autism Spectrum Disorder you wish to include on the register.
