Date Revised: July 9, 2024

When you join SPARK, you will get access to a personalized web page where SPARK displays important information about the study including research opportunities and personal reports. This is your SPARK Dashboard. You can access your SPARK Dashboard by logging in on the SPARK website.

What are SPARK Surveys?

SPARK surveys gather important information, such as behaviors and skill levels, that helps SPARK and other researchers better understand autism.  Your information leads to discoveries!

Why Are Your Survey Responses Important?

Researchers need a complete picture of autism in the entire family to understand how it occurs. Along with the surveys that you receive when you first join the study, new surveys will appear on your dashboard occasionally, so check your Dashboard often to see if there are new opportunities.

Having more complete information about you/your family may help with our genetic analysis and may increase the chance we find genetic results for you or other members of the SPARK community. Surveys also help researchers learn about many other aspects of life with autism.

SPARK also uses the information you enter to match you to additional autism research studies through its Research Match program. As you or your family change and grow, SPARK wants to match you with the right opportunities.

Your information will help improve the lives of people with autism by identifying the causes of autism and studying what matters to autistic people and their families.  This will inform more effective therapies, treatments, services, and supports. Because without research, we are just guessing.

Gift Codes and Personalized Reports

When you complete certain surveys, you will receive Amazon.com gift card codes. In this article, these surveys are marked with a dollar sign ($).

For some surveys, you will receive a personalized report of behavior or development, showing how your child or dependent compares to the general population and to the broader SPARK community. In this article, you will see an asterisk (*) next to surveys that have personalized reports.

Which Surveys Should I Complete?

Please complete all surveys that display on your SPARK dashboard. The more information you provide, the more we will learn about autism and autism genetics. You will see some or all the following surveys at different times depending on your age and the age of other family members in the SPARK study.

• Adult Self-Report (ASR) seeks to understand well-being and mental health in autistic adults and in parents. (*$)
• Background History includes questions about demographics, development, and other family members who have autism. ($)
• Basic Questionnaire asks about birth complications, medical issues, and developmental and behavioral conditions in all family members. This survey can provide clues to genetic conditions.
• Child Behavior Checklist (CBCL) measures behavioral and emotional challenges in children. (*$)
• Coordination Questionnaire reports the extent of your child’s motor delays. (*$)
• Family ASD Update gathers updates on other family members’ diagnoses. 
• Repetitive Behavior Scale-Revised (RBS-R) measures the amount and impact of repetitive interests and behaviors. (*$)
• Sibling Update Survey gathers an update on siblings who may have received a new diagnosis of autism.
• Social Communication Questionnaire – Lifetime (SCQ) screens for the presence of signs of autism in all children, including siblings. (*)
• Social Responsiveness Scale (SRS-2) reflects on behaviors and habits common among autistic children and adults. ($)
• SPARK Guardianship Survey asks a few questions about your child’s legal status to determine whether we continue to communicate with you, as their legal guardian, or directly with your child as an independent adult. This survey is also used to determine whether the child needs to re-consent as an adult to stay in the study.
• Update on Cognitive Development keeps researchers up to date on your child/dependent’s development.
• Vineland Adaptive Behavior Scales (Vineland-3) estimates progress or delays in language and everyday skills. (*$)

How Do Researchers Use Information from SPARK Surveys?

Researchers use this information to study different aspects of autism, including early signs and predictors, differences between boys and girls, and how symptoms may change over time.  Researchers also look for patterns or clusters of symptoms to link to particular genes.  Your survey responses provide clues that researchers use to discover new autism risk genes, to report back to families and to the world.  Many studies have already been published, and many more are underway.

Vineland Adaptive Behavior Scales (VABS-3)

Dr. Jonathan Sebat’s lab at University of California San Diego used the SPARK Vineland data to look at everyday skills along with many other behavioral dimensions, to see exactly what aspects of personality and development our rare and shared genetic changes might be driving in autism.

Basic Questionnaire

Dr. Vahe Khachadourian and colleagues from the Icahn School of Medicine at Mount Sinai used the Basic Questionnaire to look at the frequency of co-occurring health conditions among autistic individuals, as compared to their non-autistic siblings.  

Coordination Questionnaire and Background History Questionnaire

Dr. Anjana Bhat from the University of Delaware used data from these surveys to highlight the need for additional funding for motor services such as physical therapy, for autistic children with motor difficulties.  

Social Communication Questionnaire (SCQ), Background History Form, and IQ Scores

An international team of researchers led by Dr. Thomas Rolland from the Institut Pasteur at the Université Paris Cité used SPARK data from these measures to show the phenotypic diversity of individuals both with and without autism, who have variants in autism-related genes.

Resources

• Webinar: What SPARK Gives Back to Its Participants
• Webinar: What Information SPARK Collects and Why

Survey References

• Adult Self-Report (ASR)
  Achenbach, TM. (2003). Research Center for Children, Youth, and Families at the University of Vermont.
• Child Behavior Checklist (CBCL)
  Achenbach, TM. (2001). Research Center for Children, Youth, and Families at the University of Vermont.
• Coordination Questionnaire
  Wilson et. al. (2000)
• Repetitive Behavior Scale-Revised (RBS-R)
  Bodfish et al., (2000)
• Social Communication Questionnaire– Lifetime (SCQ)
  Rutter M, Bailey A, Lord C, & Berument SK. (2003). Western Psychological Services.
• Social Responsiveness Scale. (SRS-2)
  Constantino JN, Gruber CP. (2012). Western Psychological Services.
• Vineland Adaptive Behavior Scales (Vineland-3)
  Sparrow, SS., Cicchetti, DV, & Saulnier, CA. (2016). Pearson.