The purpose of the Australian ASD and ADHD Study (AAA Study) is to try and improve our understanding of the emotional, educational, employment and financial impacts on individuals and their families who are living with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). We are also investigating the genetic factors that influence these traits and their impacts.
To study the impact of ASD and ADHD on individuals and families we would like to collect information on experiences with health, education and employment. We are interested in finding out what has worked for you and what hasn’t.
This study is open to:
We acknowledge that people have different preferences for the language used to discuss mental health issues. We have been guided by the language used by many Australian Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) community groups, the Mindframe guidelines and the Mental Health Coordinating Council Recovery Oriented Language Guide. We apologise if this is not your preferred language style.
The Australian ASD and ADHD Study is being conducted by researchers from the Mental Health Research Program at the QIMR Berghofer Medical Research Institute, a not-for-profit research institute located in Brisbane, Queensland. QIMR Berghofer is a world-leading medical research institute, renowned for our efforts in both discovery and translational (real patient setting) research.
This research project has been approved by the Human Research Ethics Committee of the QIMR Berghofer Medical Research Institute (QIMRB-HREC).
Participating in this study can make important contributions to improving outcomes for individuals and families living with ASD and ADHD.
One of the things we are looking at in this study are barriers and problems with access to and delivery of health and education services. We hope that by collecting this information from members of the ASD and ADHD communities we will be able to identify barriers that could be addressed to improve access and service delivery.
There is no direct clinical benefit to participants. This is not a treatment-based study or clinical trial.
If you choose to participate, we will ask you to fill in an online survey.
The survey asks you about experiences with ADHD and/or ASD, interactions with health care, support needs, educational experiences, costs and lifestyle impact.
We may also ask you [if you participated as an adult] or your child [if you participated as a parent/caregiver] to supply us with a sample of saliva, which we will use to extract DNA to look for genetic factors that influence these traits.
The survey may take around 30 minutes.
We may contact you after the survey is completed to discuss if you [if you participated as an adult] or your child [if you participated as a parent/caregiver] would like to donate a saliva sample. If you or your child agree to give a saliva sample we will send you a sample collection kit through the post. Saliva samples can be collected in the privacy of your own home at a time that suits you. Providing a sample takes about 5-10 minutes. The saliva sample is sent back to us through the post using a pre-paid envelope.
You may find that the answers to your questions are listed in our Frequently Asked Questions Section below.
If you require any further general queries about the Australian ASD and ADHD Study, please see our contact details below:
Call: 1800 257 179
Write to: Locked Bag 2000, Royal Brisbane Hospital, Herston, QLD, 4029, AUSTRALIA
In 2013 the criteria used to diagnose ASD and ADHD were updated. Autism spectrum disorder replaced the diagnoses of autistic disorder, Asperger’s disorder and pervasive developmental disorder and changes were made to the age criteria for ADHD. The new criteria also make it possible for a person to be diagnosed with both ASD and ADHD.
We’re interested in the way these changes might have influenced the support, impacts and treatment experiences of individuals who are living with ASD and/or ADHD and their families. We’re also interested in finding out if the updates to the diagnostic criteria might help us find new genetic factors that influence these traits. To look at this we plan to compare the data provided by individuals diagnosed before and after these changes were made.
Researchers are seeking individuals who either:
1. Have been diagnosed with or treated for ADHD or ASD, or both ASD and ADHD. In this case you would be asked to read the study information sheet, provide consent to participate and complete the online survey. You may then be asked to provide a saliva sample.
2. Are the parent/caregiver of a child diagnosed with or treated for ADHD or ASD, or both ASD and ADHD. In this case the parent/caregiver will be asked to read the study information sheet, discuss participating with their child and provide consent to participate in the study. The parent/caregiver will be asked to complete the online survey, which the child can help complete if they would like to. The parent/caregiver may then be asked if their child can provide a saliva sample.
Yes, you can participate in the study and complete the questionnaire.
Unfortunately, at this stage, we are unable to collect DNA samples from people living outside of Australia.
To show our appreciation for the time and effort given by participants in the Australian ASD and ADHD Study’, each participant who completes the study before 31st January 2024 will receive an e-gift card to the value of $25. Unfortunately we are unable to reimburse after this date.
Please note that you will still be reimbursed for your time in completing the survey if you do not provide consent to access your Medicare and PBS information. There is no direct clinical benefit to participants. This is not a treatment-based study or clinical trial.
After completing the survey, you [if you participated as an adult] or your child [if you participated as a parent/caregiver] may be asked to donate a saliva sample. We will extract DNA from the saliva to allow us to investigate genetic factors that influence these traits and their impacts.
Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.
Study participation is strictly confidential. All patient information provided will be maintained in accordance with the Commonwealth Privacy Act (1988) and National Health and Medical Research Council (NHMRC) Guidelines.
Personal details, questionnaire data and genetic information will all be stored in separate, firewalled password protected databases, and the only link between your personal details and your other data is your participant identification number.
Linking your personal details and the other datasets using this number is restricted to members of the data collection research team. Access to these databases and samples are compartmentalised – the data collection team can only access your personal and survey information, analysts can only access your survey information and genetic data, and laboratory staff can only access your biological sample and DNA. This compartmentalisation protects the confidentiality of participants. When results are published they are done as aggregated data altogether, no individual results are included.
Participant DNA will be stored at QIMR Berghofer Medical Research Institute.
This research is not designed to provide any clinical results to participants. The study does not undertake individual analysis of each sample provided, but rather analyses all samples together.
If you have a personal interest in obtaining a genetic test, we suggest you consider contacting a genetic testing entity which can provide such testing.
We want to provide as much feedback as possible to participants about the study. In the consent form, we will ask you if you would like to receive study updates. If you agree, we will send updates via email during the study.
Health professionals who work with people living with ASD and ADHD include GPs, psychiatrists, paediatricians, psychologists, mental health nurses, mental health social workers, and counsellors.
Kids helpline (https://kidshelpline.com.au/ or 1800 55 1800 nationally) and Parentline (https://parentline.com.au/ call 1300 30 1300 QLD and NT only) offers free support and counselling to adults, parents, children, and carers.
If you are experiencing mental health issues or suicidal feelings contact Lifeline on 13 11 14, BeyondBlue 1300 224 636, Suicide Call Back Service on 1300 659 467 or Headspace on 1800 650 890. If it is an emergency call 000.
In this study, we are not conducting clinical genetic testing. We are also not providing participants any personal or family information from the research. Because of this, under the current Australian guidelines you do not need to disclose to Insurers that you participated in this study. For further information, refer to this summary article discussing insurance and genetic research, as well as Section 10.3 of the Financial Services Council policy on genetic testing and research (fsc.org.au).
If you are having trouble producing a sample, please visualise squeezing a half-lemon.
Please note that any volume is useful, even with bubbles.
If you are still unable to produce a sample, take a teaspoon of water, vigorously swish it around in your mouth and add that to the tube.
If you find the saliva collection kit is not suitable for you to use please let us know as there are other sample collection options available that we can provide. Please call or email us using the contact details below if this is an issue.
Even if your saliva sample is discoloured in the tube (e.g., lipstick or food scraps or blood), there is still plenty of your DNA in the tube for us to extract and use. Please return it to us and if we need you to provide another sample we will be in contact.