Document 389295

Dominant research focus on deficits
 Inclusive research methodology with
children rarely used
 Challenges:

› The ‘nature ‘ of autism
› Access and consent
› Suitable research methods
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 Reluctance
to participate
 Concrete thought processes
 Difficulty in talking about the future
 Lack of personal insight
 Dislike of change
(Preece, 2002)
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Autism Spectrum Disorders (ASD)
• Autism
• Asperger’s Syndrome
• Pervasive Developmental Disorder
• Higher Functioning Autism
• Atypical Autism
Repetitive or
Unusual
Behaviour
Two-way
Social Interaction
Communication
&
use of Language
Dislike
Change
Prefer
Routine
(Klin, Lang, Cicchetti, & Volkmar, 2000; Bailey, Palferman, Heavey, & Le Couteur, 1998;
Chakrabarti & Fombonne, 2005; Le Couteur et al., 1996; Lord, Leventhal, & Cook Jr., 2001)
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
Ethical and methodological dilemmas
 Access and consent
• Tension between the rights of children to participate in
research, and the carers’ responsibility to protect them.
• Adult preconceptions about children's participation
abilities
 Research methodology
 Traditional research approaches unsuitable
 Traditional data collection methods lack flexibility
 A single method is not likely to suit all
(Beresford, Tozer, Rabiee, & Sloper, 2004; Kelly, 2005;
Kelly, McColgan, & Scally, 2000; Morris, 2003; Preece, 2002)
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
Focus on Teenagers
› knowledge, strengths and preferences
Collaborative participatory
 Teenagers authoritative

› Qualitative methods
› Issues within broad topic areas

Analysis aimed to identify meanings
› Collective
› Individual
‘New’ Sociology
of Childhood
Social Models of
Disability
(Including Alderson & Morrow, 2004; Christensen & James, 2000; Christensen & Prout,
2002; Davis, 1998; Davis, Watson, & Cunningham-Burley, 2000; Kelly, 2005; Kelly,
McColgan, & Scally, 2000; Mason & Urquhart, 2001; Oliver, 1990; Thomas, 1999; Prout &
James, 1990)
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

‘New’ Sociology of
Childhood


Children as social
actors
Co-constructors of
knowledge
Taking children’s
views seriously
Lives in the present
and thoughts on the
future
(Alderson, 2001; Fattore & Mason, 2005; Fattore, Mason, & Nixon, 2005;
Mayall, 2002; Prout & James, 1990)
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Impairment

physical, cognitive,
communication or
sensory limitations
Disability

oppressive barriers,
negative attitudes,
lack of support, access
or equipment
Social (relational)
Model of Disability
Questions ‘social
norms’
(Davis,
2000; Morris, 2003; Oliver, 1990, Thomas, 1999)
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Research
phases
Means of
Methods
Communication
Purpose
1
Parent
consultation
Phone
Semistructured
interviews
•Parent recruitment &
consent
•Preliminary info about
teenager
communication
requirements
2
Parent &
Teenager
consultation
Face to face
Semistructured
interviews
•Teenager recruitment &
consent
•I.D. methods &
communication
strategies
3
Individual
engagement
of teenagers
(2 – 5 visits +
other contact)
•Face to face
•SemiData collection process
structured
interviews
•‘Being-with’
(Verbal, Signs,
Cards)
(Verbal, written,
signs, photos,
pictures)
•Email
(written)
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Six participants
 13 – 18 years of age
 2 females
 4 males
 Secondary education

› Main stream classes with varying support
› School for specific purposes (SPSS)
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Social Stories ™ (Gray, 2002; Gray & Garand, 1993)
Modified Social story (Beresford, Tozer, Rabiee & Sloper, 2004)
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Lise
would like to see what John* is doing
at school today - Is this ok?
John can say
or nod his head
John can say
or shake his head
Can Lise take some photos of John?
John can hold STOP card
have a break
to stop or
(*Not participants real name. Use of photo permitted)
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
Semi-structured interviews
› Face to face
› Email

Being-with
› Participant observation
› Active participation
› Interaction
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Strategies
›
›
›
›
›
›
›
›
Communication Toolbox
Preparing participants
Individualising questions
Rephrasing questions
Clarifying answers
Parent assistance
Using humour
Using Individuals’ own ideas
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
Strategies
› Max 4 questions per email
› Setting the scene
› Prompt response to participant email


Benefits
›
›
›
›
Convenient
Cost effective
Efficient
Generates written data
›
›
›
›
No body language observations
Access to computer and internet
Computer literacy
May compromise young people’s privacy & confidentiality
Limitations
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
Strategies
› Preparation
› Spending time in
several settings
› Observing and
interacting
› Taking photos and
making video clips
› Interactive Activities
(Use of photos permitted)
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Talking mat™ (Cameron & Murphy, 2002)
Write draw and talk
Profile map
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
Participation abilities and competencies
of young people with autism differ.
› Important to value diverse forms of
knowledge and contribution
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
Difficulty convincing adults that young
people’s views are important
› Researchers must be prepared to
continually emphasise value of young
people’s views.
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
Sensitivity
› Abilities
› Preferences

Reciprocity
›
›
›
›
Style of Communication
Develop rapport
Avoiding ambiguity
Individualizing interviewing style
Flexibility
 Respect

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
Young people diagnosed with autism
Were a diverse group
Had something to communicate
Had different views to their parents
Had different knowledge of and interest in
autism
› Did not think autism was always most
important in their lives
›
›
›
›
23
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