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Autism Family Experience Questionnaire

0 Shared Subjects

The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. The 48 item questionnaire contains items organized into four pre-specified domains: experience of being a parent; family life; child development, understanding and social relationships; and child symptoms. The AFEQ includes both positively and negatively worded statements and was scored on an order scale: 1 = always to 5 = never, with an option for “Not Applicable”.
Clinical Assessments
Autism Spectrum Disorders; Parenting
05/11/2022
afeq01
05/26/2022
View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Description Value Range Notes Aliases
subjectkey GUID Required The NDAR Global Unique Identifier (GUID) for research subject NDAR*
src_subject_id String 20 Required Subject ID how it's defined in lab/project
interview_date Date Required Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY
interview_age Integer Required Age in months at the time of the interview/test/sampling/imaging. 0::1440 Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported
afeq1 Integer Recommended I lack confidence in knowing how to help my child 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq2 Integer Recommended I feel listened to by professionals 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq3 Integer Recommended Working with therapists or professionals helps me feel confident 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq4 Integer Recommended I am confident that I understand my child's level of development 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq5 Integer Recommended I feel I know how to help my child progress 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq6 Integer Recommended I feel I'm getting it wrong 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq7 Integer Recommended I have realistic milestones for my child's development 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq8 Integer Recommended I doubt my ability to help my child's development 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq9 Integer Recommended I feel frustrated at not knowing how to help my child 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq10 Integer Recommended I have coping mechanisms to help my child 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq11 Integer Recommended Professionals don't understand my family's needs 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq12 Integer Recommended It's a continual battle to get the right help for my child 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq13 Integer Recommended My child is getting the right help 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq14 Integer Recommended Family life is a battle 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq15 Integer Recommended I feel guilty about not giving other members of the family enough attention 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq16 Integer Recommended My child is flexible in adapting to the demands of family life 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq17 Integer Recommended Family life is calm 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq18 Integer Recommended I know how to cope with my child when going on an outing in a public place e.g cafe or restaurant 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq19 Integer Recommended I feel confident to go out to family events with my child 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq20 Integer Recommended I feel confident in making routines at home more manageable for my child 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq21 Integer Recommended I feel comfortable about having visitors to our home 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq22 Integer Recommended My child has fussy eating that makes it difficult to go away for a break 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq23 Integer Recommended My child can concentrate on an activity for a short time 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq24 Integer Recommended My child can spontaneously begin communication with me 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq25 Integer Recommended My child spontaneously begins communication with other members of the family 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq26 Integer Recommended My child can request his/her needs appropriately 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq27 Integer Recommended My child gets frustrated at not being understood 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq28 Integer Recommended My child can let me know when he/she is hurt 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq29 Integer Recommended I know when my child feels poorly 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq30 Integer Recommended My child has repetitive behaviour and sensory interests that make it difficult to go on an outing 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq31 Integer Recommended My child is good at sharing with others 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq32 Integer Recommended My child has to have his/her own way 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq33 Integer Recommended My child is aware of other people's needs 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq34 Integer Recommended My child gets invited to birthday parties 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq35 Integer Recommended My child plays with other children 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq36 Integer Recommended I have to go with my child to supervise play with other children 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq37 Integer Recommended My child is happy 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq38 Integer Recommended My child is anxious 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq39 Integer Recommended My child is tolerant of mistakes 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq40 Integer Recommended My child is calm 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq41 Integer Recommended My child is angry 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq42 Integer Recommended My child is unpredictable 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq43 Integer Recommended My child can let me know what he/she is upset about 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq44 Integer Recommended My child understands appropriate behaviour in familiar social situations 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq45 Integer Recommended My child knows the difference between family members and strangers 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq46 Integer Recommended My child acts differently with family members compared to strangers 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq47 Integer Recommended My child is embarrassing when going out 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
afeq48 Integer Recommended My child has repetitive behaviors that make day to day life impossible 1::5; -99 1=Always; 2=Often; 3=Sometimes; 4=Rarely; 5=Never; -99=N/A
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

At the top of this page you can also:

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