ASD-CARC :: Research Project: Online Research Questionnaires

Online Research Questionnaires and Projects

To start any of the following projects and questionnaires, you must first log in or register. Once you have logged in, click on "My Questionnaires" in order to complete the questionnaires.

Each questionnaire has been designed to uncover different information regarding the individual with an ASD, their family members, and other aspects of their daily lives. These questionnaires are analyzed with the results from other projects such as our genetics and mobile lab studies.

Core Questionnaires:
(to be completed by a parent about their child with an ASD, or by an individual with an ASD about his/herself)

The Questionnaires in this project help us quantify the defining ASD traits necessary when analyzing the results from all of our other projects. These questionnaires should be completed before completing other questionnaires or projects. This project's questionnaires include:

Parent PDD Behavior Inventory
Diagnostic Information
Social Communication Questionnaire

ASD Characteristics:
(to be completed by a parent about their child with an ASD, or by an individual with an ASD about his/herself)

The Questionnaires in this project help us learn more about the similarities and differences amongst individuals on the spectrum. This project's questionnaires include topics such as:

Sleep
Language
Aggression
ASD Diagnostic History
Special Abilities in ASD

Family Characteristics:
(for all family members over 16 years of age)

The Questionnaires in this project help us learn more about the what characteristics and traits are present in family members of individuals on the spectrum. This project's questionnaires include:

Autism Quotient (AQ)
Obsessive Compulsive Core Dimensions Questionnaire (OCCDQ)

Family Needs and Supports:
(to be completed by the parent or an adult with an ASD)

Clinical Genetic Evaluation and Counselling of Autism Spectrum Disorders: Patient and Family Perspectives of their Value and Impact

Prenatal Events and Stress Factors:
(to be completed by a parent about the pregnancies for each of their children)

The Questionnaires in this project ask about events that occurred during each pregnancy as well as additional questions about assisted human reproductive technologies.

Prenatal Events and Stress Factors in the Development of ASD
Prenatal Supplementary Survey

Alphabetical Listing of ASD-CARC Research Questionnaires

Listed below are some of the questionnaires designed and used by ASD-CARC researchers to better understand the dimensions of autism spectrum disorders (ASDs).

Autism Quotient - designed for parents to report traits of an ASD;
Behavioural Evaluation of Disorders of Sleep (BEDS) - surveys the possible sleeping disturbances or difficulties related to sleep patterns faced by an individual with an ASD;
Clinical Genetics - to measure the value and impact of a clinical genetics assessment for ASDs.
Diagnostic History - a study on the early diagnostic history of individuals with ASD.
Diagnostic Information - collects information regarding the diagnosis of an ASD;
Language Proficiency Profile (LPP-2) - assessment survey of the language abilities and uses of verbal individuals;
Modified Overt Aggression Questionnaire - a study on the overt aggression of individuals with ASD.
Non-Verbal Language Proficiency (LPPNV) - assessment survey of the language abilities and uses of non-verbal individuals;
Obsessive-Compulsive Core Dimensions - questionnaire for all family members over 16 years of age to report certain personality aspects, emotions and motivations;
Pervasive Developmental Disorder Behaviour Inventory - comprehensive survey of the behaviour of an individual with an ASD;
Prenatal Events and Stress Factors - collects information regarding possible prenatal stresses or birthing complications for the mother or child;
Social Communication Questionnaire (SCQ) is a 40-item, measure that taps the symptomatology associated with autism spectrum disorders (ASDs) and can be completed in less than 10 minutes.

Questionnaire Descriptions

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 family members of an individual with an ASD, including the individual and children who are 16 years of age or older. 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:

activity preferences
social interactions
perceptions of social situations
ability to concentrate in certain scenarios
specific interests

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:

the number of hours of sleep per day
behaviours and activities before sleep
sleeping aids used
the level of sleepiness
dreams, nightmares, and sleepwalking that impact sleep
as well as other issues that may affect the sleep schedule

Diagnosistic Information Questionnaire (DIQ) back to top

This brief questionnaire is meant to be completed for each family member with an autism spectrum disorder (ASD). The survey requests for the participant to specify the details of both the initial and most recent ASD diagnosis. The survey also requests 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 skill of the individual with an autism spectrum disorder (ASD). They may indicate that the individual is exceeds, meets or is below a certain communication skill, or that the participant is unsure of the skill level.

The LPP-2 consists of five sections concerning communication:

Form: general form of the child's communication skills;
Content: content of the child's communication;
Reference: ability to make reference in communicating;
Cohesion: ability to maintain and follow the flow of conversation;
Use: how the child uses language, or the function language serves the child.

Language Proficiency Profile - Non-Verbal (LPPNV) back to top

This questionnaire is designed to assess the non-verbal communication abilities of children with an autism spectrum disorder. 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:

communicates a desire;
communicate a request;
initiate or interact in play activities;
request attention;
etc.

Obsessive-Compulsive Core Dimensions Questionnaire (OCCDQ-T) back to top

Certain dimensions of personality, emotions and motivations, present to some extent in all people, may be on a continuum with clinical symptoms and disorders. Repetitive thoughts and behaviours are present in both Autism Spectrum Disorders (ASDs) and in other clinical conditions, such as Obsessive-Compulsive Disorder (OCD). However, it is unknown to what extent these shared repetitive tendencies reflect the influence of similar underlying dimensions of personality, emotions, and motivations. 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 on 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 autism spectrum disorder (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 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.

Prenatal Events and Stress Factors in the Development of ASD back to top

There are many different prenatal factors that are being suggested as associated with the development of ASD. Some of these factors include:

stressful events during pregnancy
systemic infections during pregnancy
a multiple-birth pregnancy

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.

Social Communication Questionnaire (SCQ) back to top

This questionnaire helps evaluate communication skills and social functioning in children who may have autism or autism spectrum disorders. Completed by a parent or other primary caregiver in less than 10 minutes, the SCQ is a cost-effective way to determine whether an individual should be referred for a complete diagnostic evaluation. The Lifetime Form focuses on the child's entire developmental history and identifies individuals who may have autism and should be referred for a more complete evaluation.

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