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- Online Research Questionnaires -
 Listed below are some of the questionnaires designed and used by ASD-CARC researchers to better understand the many dimensions of Autism Spectrum Disorders (ASDs). Each survey has been designed to uncover different information regarding the individual with an ASD, their family members, and aspects of their daily lives. To complete any of these surveys you will need to be registered and logged in. The questionnaires include (select a survey title to view more information):
Alphabetical Listing of ASD-CARC Research Questionnaires Autism Quotient (AQ) back to top This questionnaire has been designed to assess autistic traits that may occur in individuals with an autism spectrum disorder (ASD) as well as those without an ASD. This survey is intended to be completed by adults with an ASD, family members of an individual with an ASD, as well as any other family members who are 16 years of age or older and able to complete the questionnaire. The results of the Autism Quotient Survey will help ASD-CARC researchers to reveal sub-types of ASD by helping to identify familial characteristics and autistic traits. The survey includes questions relating to:
Behavioral Evaluation of Disorders of Sleep (BEDS) back to top Sleep disorders are common for people with an autism spectrum disorder (ASD). Researchers currently do not know the nature of these sleep disturbances or the extent of the disturbances faced by individuals with an ASD. This survey asks questions about the sleep patterns of the person with an ASD as well as their siblings. Through the collection of this information for a large number of families, our researchers hope to understand the basis of sleep disturbances that are associated with an ASD. This survey collects information about:
Diagnostic History -back to top Families of children with a diagnosis of Autism Spectrum Disorder (ASD) often report frustration with the process of diagnosing their child. It often involves multiple visits to a variety of different professionals with various diagnoses having been given, such as ADHD, Conduct Disorder, etc., as well as possible medications and changes in this diagnosis over time. This study is intended to document these complicated histories which can be frustrating to families. Furthermore, the primary goal of this study is to better understand family's experiences, which may help to clarify appropriate diagnostic procedures for professionals. Diagnostic Information Questionnaire (DIQ) back to top This brief questionnaire is meant to be completed for each family member with an ASD. The survey requests that the participant specify the details of both the initial and most recent ASD diagnosis. The survey also asks for information regarding the type of test used to make the diagnosis, and the health care professional who made the diagnosis. Language Proficiency Profile (LPP-2) back to top The LPP-2 has been designed to identify the developing language skills of children who use a variety of means to communicate. For each question in the five sections of this survey, the participant is asked to assess the communication skills of the individual with an ASD. They may indicate that the individual exceeds, meets or is below a certain communication skill level, or that the participant is unsure of the skill level. The LPP-2 consists of five sections concerning communication:
This questionnaire is designed to assess the non-verbal communication abilities of children with an ASD. It can be completed by parents or care-providers. The questions pertain to the types of non-verbal communication that a child with an ASD uses to:
Modified Overt Aggression Questionnaire back to top This brief questionnaire is meant to be completed by a parent or guardian on each family member with an ASD. The purpose of this study is to assess the associations between biological factors and whether or not a person with autism shows aggressive or self-injurious behaviors. The survey should be completed whether or not the affected individual shows significant aggressive behaviors. Obsessive-Compulsive Core Dimensions Questionnaire (OCCDQ-T) back to top Certain dimensions of personality, emotions and motivations, are present to some extent in all people. Repetitive thoughts and behaviours are present in both Autism Spectrum Disorders and in other clinical conditions, such as Obsessive-Compulsive Disorder (OCD). However, it is unknown if these shared repetitive tendencies have the same origin in people with different conditions. In order to study this in family members of individuals affected by ASD, we invite you to complete this questionnaire regarding your own typical thoughts, feelings and actions. The questionnaire has 31 items, which are rated on a 5-point scale ranging from "Never Applies to Me" to "Always Applies to Me". By collecting this type of information from a large number of families, we hope to better characterize and understand the link between ASDs and different dimensions of personality and emotions in family members. We hope to correlate these results with genetic findings, in families who participate in our genetic studies. Therefore, we are inviting all parents to complete the OCCDQ-T. PDD Behavioural Inventory (PDDBI) back to top The PDD Behavior Inventory (PDDBI) is a standardized tool for assessing the behaviors shown by children between 1-1/2 and 12-1/2 years who are on the autism spectrum. It is essential in allowing ASD-CARC researchers to standardize information on all research participants. The introductory section of this survey requests information regarding the health of the individual with an ASD. The core of the questionnaire is divided in two sections: Challenging Behaviours and Adaptive Behaviours. The scores that we obtain on the PDDBI are critical to our genetic studies. They help us to understand which genes play a role in affecting certain behaviors in the children and/or in affecting their overall diagnosis. For example, using the PDDBI information supplied by our parents, we have already found some genes that affect the severity of the deficiencies of children's social and communicative skills. We would not have been able to observe this without the PDDBI data. For this reason, we ask you to please take the time to complete both sections of the PDDBI, including the background information. If there are items that you do not understand, please contact us. Do not leave any items blank. We thank you for your efforts and diligence in helping us to understand the causes of the pervasive developmental disorders. If your affected child has a sibling between 2 and 12 years of age, it would be extremely helpful if you would fill out a PDDBI on this child as well. It does not matter whether the sibling has autism, some other related disorder, or no disorder at all. You should note, however, whether the child has significant vision, hearing, or motor problems and, if the child has a diagnosis, what that diagnosis is. This information will help us to identify those genes associated with autistic behaviors as opposed to those genes associated with behaviors that occur in non-autistic children as well. Prenatal Events and Stress Factors in the Development of ASD back to top There are many different prenatal factors that have been suggested as associated with the development of ASD. Some of these factors include:
We are carrying out research to determine whether prenatal drug exposure (for example, to stop premature labour, etc.), stress and infections are different for infants who develop an ASD versus those who do not. Psychological Well-Being in Parents Study back to top This is a 15 part study about the psychological well-being of individuals with a child with an ASD, to determine the influence of a number of factors, including coping styles and social support resources on psychological well-being. It is not necessary to complete all parts in one sitting; however ALL parts should be completed.
Social Communication Questionnaire (SCQ) back to top We are using this questionnaire to examine social and communication issues in children and adults with ASDs, as well as their siblings and other family members, in order to look at the inheritance of these characteristics. It is completed by a parent or other primary caregiver in less than 10 minutes. . |
