Mailing address

Olga Tennison Autism

Research Centre
School of Psychological Science
La Trobe University
Kingsbury Drive
Victoria 3086 Australia
T + 61 3 9479 2497
F + 61 3 9479 1956
E otarc@latrobe.edu.au
latrobe.edu.au/otarc

FACULTY OF SCIENCE,
TECHNOLOGY AND ENGINEERING

ABN 64 804 735 113
CRICOS Provider 00115M

Participant Information Statement

PARENTING AND CHILD OUTCOMES:
AN EXPLORATORY STUDY OF THE IMPACT OF AUTISM SYMPTOMS

Chief Invest igat or : Professor Cheryl Dissanayake, Director Olga Tennison AutismResearch Centre, La Trobe
University. Tel: (03) 9479 1162, Email: c.dissanayake@latrobe.edu.au
Co-Invest igat or : Associate Professor Amanda Richdale, Principal Research Fellow, Olga Tennison Autism
Research Centre, La Trobe University. Tel: (03) 9479 1742, Email: a.richdale@latrobe.edu.au
Resear ch Assist ant : Lindsay Pamment, Olga Tennison AutismResearch Centre, La Trobe University. Tel:
(03) 9479 3217, Email: l.pamment@latrobe.edu.au
We wish to acknowledge The William and Vera Houston Memorial Trust for their generosity and interest in
funding this new area of research

You are invited to participate in a research project being conducted by La Trobe University. This information sheet
describes the project in straightforward language, or plain English. Please read this sheet carefully and be
confident that you understand its contents before deciding whether to participate. If you have any questions about
the project, please ask one of the investigators.

The ai ms of the proj ect:
This research aims to explore the relationship between autismand parenting. Many people have some symptoms
of autismwithout even realising it. We would like to understand if and how parental symptoms of autism (both low
and high), as well as other factors like depression, anxiety, and stress might relate to a childs level of autism
symptoms and their day-to-day living skills.

How you have been i dentifi ed:
You may have responded to one of our advertising flyers and contacted us, or we may have located your details
through your registration as a participant with the Olga Tennison AutismResearch Centre and/or AutismVictoria
t/a Amaze. We have permission to access details for families whose composition consists of a mother and a
father living together at home with at least one child who is aged 5 -11 years who does not have an autism
spectrumdisorder or another disability.
However, to be eligible for this study, the parents also need to have a close relative with an ASD. For example:
they have another child who has an ASD,
the parent's own brother, sister or parent has an ASD, or
one of the parent's themselves has a diagnosed ASD.

What i s i nvol ved?
Questionnaires for Each Parent (Mother and Father):
We will send both the mother and the father a set of five questionnaires either by hardcopy or via an email link,
whichever is preferred. We ask each parent (the mother and the father separately) to fill in a set of questionnaires
about themselves. The questionnaires ask about autismsymptoms, symptoms of depression, anxiety and stress,
and other questions about their experience of parenting. These parent questionnaires take only 5-10 minutes
each to complete. The t ot al t ime commit ment f or a par t icipat ing par ent is est imat ed t o be bet ween 30 - 50
minut es. The questionnaires can be completed over multiple sittings.
Additional Questionnaires for Primary Caregiver:
We ask one parent to nominate themselves as the Primary Caregiver, and in addition to the questionnaires for
mothers and fathers, primary caregivers fill in another set of four questionnaires. Three of these are about the
child who doesnt have autism, and one is about general family details. Three of the questionnaires for the
Primary Caregiver can be provided online via an email link, but the fourth must be sent by post and returned via a


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reply-paid envelope. One questionnaire will take around 5 minutes and two will take between 10-20 minutes each
to complete. The posted questionnaire takes between 20-60 minutes to complete. The t ot al t ime commit ment
f or a Pr imar y Car egiver is est imat ed t o be a f ur t her 45minut es 1 hour in addit ion t o t he 35-50 minut es of
commit ment t o t he par ent ing quest ionnair es pr eviously st at ed. Therefor e a Pr imar y Car egiver s t ime
commit ment is est imat ed t o r ange in t ot al f r om 1 hour 15 minut es t o appr oximat ely 2 hour s. The
questionnaires can be completed over multiple sittings.
Teacher Questionnaires:
We would also like parents to ask their childs teacher to fill in some Teacher versions of questionnaires so that
we can gain another perspective about this same child. One questionnaire will take 5-10 minutes to complete, the
other will take around 20 minutes to complete. These questionnaires are hard-copies and the teacher can return
these to us via a self-addressed, reply-paid envelope. Teachers will be provided with this Participant Information
Statement and a letter of invitation via the parent. Teachers are at liberty to refuse participation without
consequence.

When we might need t o call you...
We ask that questionnaires be completed within 4 weeks. If online surveys have not been completed within this
time, an email reminder will be sent and a further follow-up phone call made. If the posted questionnaire has not
been completed and returned within 4 weeks a follow-up phone call will be made. If illness or frailty makes it
difficult for you to complete any of the survey within this time period please just let us know.
In t he event t hat paper -based questionnair es ar e incomplet e on r et ur n (t wo or more missing r esponses),
t he r esear ch assist ant will t elephone t o discuss t he missed quest ions and r esolve any issues t hat may
ar ise dur ing scor ing, so t hat we can ensur e t he dat a we have is accur at e and valid. Missing responses on
online questionnaires generate a reminding prompt which allows participants to review or disregard a question.
These will not be followed-up.
Use of data: Current and future uses
Information about you will be stored as hard copies and/or electronic copies as required. Any questionnaire hard
copies will be kept in a key-locked filing cabinet within the Olga Tennison AutismResearch Centre offices.
Electronic copies will be securely stored on the La Trobe University hard drives which allow only strictly
authorised access. Where possible electronic files will also be password protected. Data fromhard copies will
also be entered into a computer for statistical analysis. Only the Chief Investigators and the Research Assistant
for this project will be authorised to access any data. In accordance with privacy laws, access to the results of
your questionnaires is possible. Please email the Research Assistant to request this information.
Any information you provide to us can only be disclosed if (1) it is to protect you or others fromharm, (2) a court
order is produced, or (3) you provide the researchers with written permission. For example, to allow an
independent auditor to conduct a legal review of the process, to allow the lead researchers to access the data for
further investigation, or to allow the Research Assistant access to data to provide information in response to
requests froma participant, the lead researchers or others with legal entitlement to request such information.
As this is a new field of research, and has potential for new findings, in the event that significant findings are
made this research may continue to enable research and clinical programs to be developed. Therefore, other
researchers, students and research assistants may access this data for future projects. As we will potentially seek
to track some of the families involved in this study, data will need to remain identifiable; however all data will be
securely stored as previously stated. If no significant findings are made, then data will be stored for 5 years as
required by the Public Records Office of Victoria Standard (PROS02/01), and then it will be destroyed.
On completion of the study a summary of the overall research findings will be sent to you, however to protect your
privacy such results will not identify individuals or individual families. The results of the study may be published in
journal articles, or used in conference presentations.

Benefi ts of the proj ect
Parents may derive a general sense of wellbeing known to accompany volunteerism, and more specifically
involvement in autismresearch, particularly when one has a personal connection with the condition as parents in
this study have. You will be assisting us to gain an understanding of whether symptoms of autism impact on
parenting and child outcomes. This initial research has the potential to open up a new line of enquiry into living
with autismspectrumdisorders and further enable any assistance to be developed accordingly, and if necessary.

There are no disadvantages, penalties or adverse consequences for not participating or for withdrawing
prematurely fromthe research.



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Concerns
The questionnaires we are using are screening tools, and provide us with an indication of how you score on each
scale. These tools alone do not diagnose. If concerns arise fromanswering the questionnaires please contact one
of the relevant sources provided on the last page of this Information Statement and seek further help if necessary
froma trusted GP or psychologist.

Any questi ons regardi ng thi s proj ect may be directed to:
Chi ef Investi gator: Professor Cheryl Disanayake, Director Olga Tennison Autism Research Centre,
La Trobe University. Tel: (03) 9479 1162.
Co- Investi gator: Associate Professor Amanda Richdale, Principal Research Fellow, Olga Tennison
Autism Research Centre, La Trobe University. Tel: (03) 9479 1742.
If you have any concerns or complaints that the investigator has not been able to answer to your
satisfaction, you may contact the Secretary, Human Ethics Committee, Research Services, La Trobe
University, Victoria, 3086, (ph: 03 9479 1443, e-mail: humanethics@latrobe.edu.au). Please quote
UHEC application reference number 13-067 fa.





















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Further Resources
The following resources are provided for your convenience. Some of these sites have
quizzes which can help you to determine if seeking further help might be useful. Please talk
to a trusted GP or psychologist if you would like further help.

PARENTING
Raising Children Network: www.raisingchildren.net.au
Ngala Early Parenting & Early Childhood Services: www.ngala.com.au
The Parenting Centre: www.theparentingcentre.com.au

DEPRESSION and ANXIETY
Beyond Blue: Phone 1300 22 4636, www.beyondblue.org.au, Web chat: 4pm-10pm (AEST)
The Black Dog Institute: www.blackdoginstitute.org.au
Mind Health Connect: www.mindhealthconnect.org.au
Mind Spot Clinic: Phone: 1800 61 44 34, www.mindspot.org.au
ARCVIC (Anxiety Recovery Centre Victoria) Phone: 1300 269 438, www.arcvic.org.au

AUTISM SPECTRUM DISORDERS
Amaze (formerly Autism Victoria): Phone: 03 9657 1600 (main switch), www.amaze.org.au
Autism Awareness: www.autismawareness.com.au
Olga Tennison Autism Research Centre (OTARC): Phone: 03 9479 2497,
http://otarc.blogs.latrobe.edu.au
Autism Speaks: www.autismspeaks.org

SPECIFIC TO MEN / FATHERHOOD
Man Therapy: Phone 1300 22 2638, www.mantherapy.org.au (Chat and email support)
MensLine Australia: Phone 1300 78 99 78, www.mensline.org.au
Fatherhood Foundation: www.fatherhood.org.au
The Fatherhood Project: Phone 1300 78 99 78, www.fatherhood.com.au
Raising Children Network: http://raisingchildren.net.au/fathers/fathers.html

CONTACT A PSYCHOLOGIST:
Australian Psychological Society Find a psychologist :
Webpage: http://www.psychology.org.au/findapsychologist/Default.aspx?Mode=Quick
Phone: 1800 333 497 outside Melbourne, 03 8662 3300 in Melbourne
La Trobe University Psychology Clinic (Bundoora): Phone (03) 9479 2150
The University of Melbourne Psychology Clinic (Parkville): Phone (03) 9035 5180
Melbourne Psychology and Counselling Clinic at Australian Catholic University
(Fitzroy): Phone (03) 9953 3006
The Monash Psychology Centre (Notting Hill): Phone (03) 9902 4480