Autism in Western Australia: Surveying the experience of families of children with Autism
Spectrum Disorders
The Curtin Autism Research Group, in cooperation with the Disability Services Commission is
conducting a survey to learn about the experiences of families with a child/young person
(aged 2-18 years old) with Autism Spectrum Disorders (ASD). This survey is particularly
timely with the role-out of the new National Disability Insurance Scheme (NDIS). It is also
one of the most comprehensive surveys ever to be undertaken with families living with a
child with ASD in Western Australia. Information collected from this survey will inform
future services and policy. Importantly, this is the first wave of a longitudinal study that will
allow us to learn how the needs of families with a child with ASD change over time.
**Who can participate in the survey?**
If you are a parent or a primary caregiver of a 2-18 year old child/young person diagnosed
with ASD, and live in Western Australia, you are eligible to participate in the survey.
**What will you be asked to do?**
You will be asked to complete a survey on the processes families go through to obtain an
ASD diagnosis and to access services, the additional costs associated with having a child with
ASD, and the impacts of having a child/young person with ASD on the family's everyday life.
The survey can be completed online, by telephone or paper and pencil. It takes
approximately 60 minutes to complete the survey.
You will be given the choice to provide us with your personal details so that we can contact
you in the future. You can also participate in the survey and choose NOT to provide us with
your personal details.
You will be given the choice to give us permission to access your child's medical records and
other Department of Health and Education registers. This will allow us to examine which
treatments and investigations your child received and when they occurred.
Does my family have to participate in the survey?
Participation in this survey is entirely voluntary, and you are free to withdraw at any time
without providing a reason to do so.
The questions in the survey are designed to capture the experiences of ALL families with an
ASD child/young adult in WA. We acknowledge that some sections of the survey may not
reflect the personal experiences of some families. Some families have adjusted well
following the diagnosis of their child with ASD, while other families are finding it difficult to
adjust. The questions in the survey are not designed with one family in mind, but rather to
capture the experiences of all families on the continuum of adjustment and acceptance. This
means that some questions may not reflect your family’s personal experience. If you feel
uncomfortable in completing a particular section of the survey, you may continue to the
next page by clicking on the Next page button on the bottom of the page.
Please click the following link to access the survey: http://goo.gl/GmsIVR
If you have any further questions please do not hesitate to contact us either via e-mail on
[email protected]
Alternatively, you may directly contact the primary investigators listed below:
Chief Investigators
Dr. Sharmila Vaz,
Postdoctoral Research Fellow
School of Occupational
Therapy and Social Work
Phone: 08-9266-1849
Email: [email protected]
Professor Torbjörn Falkmer,
School of Occupational
Therapy and Social Work
Phone: 08-9266-9051
Email:
[email protected]
We thank you for your valuable time.
Curtin Autism Research Group (CARG)
[email protected]
Autism in Western Australia
URL: http://goo.gl/GmsIVR
Email: [email protected]
A/Professor Reinie Cordier,
School of Occupational
Therapy and Social Work
Phone: 08-9266-2583
Email:
[email protected]