What is the Coronavirus and Autism Behavioral Study (CABS), and how do I know if I’m eligible to participate?
The purpose of our study is to address the impact of a pandemic on the development of children with autism spectrum disorder (ASD) and their families. This study might be a good fit if you: 1) are over the age of 18-years-old; 2) have a child with a diagnosis of autism spectrum disorder (ASD) between the ages of 3- and 10-years-old (with no other known genetic or developmental disorders); 3) are comfortable reading and answering questions about you and your child in English, and have access to an electronic device; and 4) currently live in the United States.
How do you recruit for your study?
Participating families come to us from a variety of sources. Because we are looking for children with autism, our study greatly depends on referrals from service professionals and autism organizations. We strive to obtain a diverse, representative sample; thus, we are working with treatment centers, support organizations, and schools around the nation.
What would happen if I agreed to participate?
If you decide to take part in this study, you would: 1) participate in an initial phone screening (∼30 minutes); 2) complete a set of survey questionnaires designed to understand your child’s development and your family’s experiences (∼3 hours total). *Importantly, only parents are involved in this study – no direct assessment of your child will occur.
Where and when do the assessments take place? Do I have to come to the university to participate?
Our study is entirely online/virtual, so taking part is easy and enjoyable. You can complete everything from your own home at your own convenience.
How long will everything take?
After the initial Phone Screening (approximately 30 minutes), the Baseline Questionnaire should take 90 minutes to complete. Three months later, you will be asked to complete a Follow-Up Questionnaire, again expected to take 90 minutes to complete. We anticipate your total participation to amount to about 3.5 hours overall.
Does it cost anything to participate in the study?
It will not cost you anything to be in this study. As a thank-you for your time and participation, you will be compensated for each portion of the study completed, with a $20 Amazon gift card available at two time points. Additionally, because we want to help serve families as much as possible, we will provide you with a list of national resources and support services related to autism at the conclusion of your participation with us.
Will participation help me/my child?
While there are no direct benefits of being in the study, your participation could help us better understand the ways that children with autism and their families are specifically impacted by the presence of a global pandemic, which may lead to earlier and more effective identification, prevention, and treatment for this population.
Why are you working with the autism population specifically?
Individuals with autism are a unique and valuable group, as you know! By comparing the similarities and differences among individuals with autism during this shared unique experience, we can look at the extent to which the effects of the pandemic are moderated by environmental factors (e.g., the home).
If you’re measuring development in autism, then why are you testing me and not my child?
Great question! While the autism population is a primary focus for our research, for this study we are evaluating the family unit as a whole. Additionally, we understand the challenges that a home visit or in-person research would present for families under these circumstances. Given that we cannot examine your child directly and as completely as we’d like at this time, we do not want to make any causal claims about development.
What if I change my mind about participating? / What if I don’t want to fill out a particular questionnaire/question?
While we hope that you will enjoy your participation, you are free to withdraw from the study at any time and for any reason. You may also refuse to answer any question(s) you do not wish to answer. We are grateful for your time and help, so we only want you to do what you are comfortable with.
Can I have my child’s scores/results?
As part of this research, we are not providing participants with any scores or assessment results. We are researchers, not clinicians, and our team is not designed to offer detailed assessments of (or make recommendations about) your child’s functioning or learning potential.
How long will my data be stored?
Submissions to the online questionnaires will be stored in the secure REDCap platform, an encrypted software program protected through multiple security systems. No hard-copy information or materials will be utilized at any time. If you want us to remove your data separately from these procedures, simply tell us and we will do so. You are free to withdraw from the study at any time.
What if my partner/relative/etc. cannot or will not take part in the study?
This is fine, as we only need to talk to you! As long as one parent/legal guardian/caregiver has consented to join the study, then we can continue with your participation.
Who should I contact if I have any questions?
For answers to your questions or to request additional information, contact our study coordinator by phone at 614-247-4997 or by email at CABS-Research@osu.edu.