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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 phenotyping studies.
(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:
(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:
(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:
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 (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:
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.
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:
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.
Special Abilities in ASD & Savant Syndrome back to top
Many parents and family members have commented on some remarkable skills in persons with autism. These appear to be special strengths, special skills or strengths, sometimes at the level of a savant. These can be in any area of functioning, but most often occurs in the following areas:
1. Music – Playing an instrument, singing, composing, conducting etc.
2. Art – Painting, sculpture, drawing, performance art (drama), theatre
3. Calendar Calculation – can tell you what day of the week your birthday was on in 1752, for example.
4. Arithmetics/Calculation – Prime Number calculation, squares and square roots
5. Memory – Photographic memory, memorizing statistics (e.g., sports figures) or long lists (e.g., bus routes, phone books)
6. Mechanical Skills – Modeling, fixing mechanical objects (radios, clocks, computers), architecture
7. Writing – Poetry, prose
8. Language – Learning of foreign languages
9. Pseudoverbal abilities – Reading early, at a young age, but without understanding, spelling
10. Sensation – Exceedingly acute hearing, taste, smell or touch, or “synaesthesia” (merging of two or more sensations, e.g., letters that are experienced as having colour, colours that appear to have a sound)
We would like to learn more about these special skills or abilities – as well as whether a person does not appear to have any of these skills. I once mentioned to a father of a child with autism (poorly verbal) that we often hear about amazing skills at the piano for some people with autism, but what if there is a hidden ability that a person could do if only he/she were presented with, for example, a French horn? Most families do not have a French horn, but many do have a piano – so how would we know that the person with autism could play a French horn if never given the opportunity? The father replied to me that his son actually was a gifted French horn player – not because someone living with them had a French horn, but his brother who lives in the US (and quite far away) is in a Symphony orchestra and plays the French horn and they had visited him on several occasions, giving the son an opportunity to learn how to play – and then they purchased a French horn for him.
If we could learn more about how often there are these special skills and what types of skills, then families could look at different possibilities, that might even help with communication and enjoying more of what the world can offer.
Thank you so much for your interest in sharing this important information about you and your family member with an ASD to help us learn more about the potentials of individuals with ASD.
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