–Code of Practice on the Identification + Assessment of Special Educational Needs 2002 –Valuing People (2001) –Aiming High for Disabled Children (2007) –Autism Act (2009) –Support and aspiration: SEND consultation Growing body of literature on consultation But… •Focus is largely upon values + principles •tendency to address disabled children as homogeneous group. As a result: •Some research on those with greater challenges (e.g. Rose et al., 1999; Taylor, 2007) •But – bias towards with whom consultation easiest…not those on the autism spectrum
•Interviews in family home (Preece, 2006; Preece and Jordan, 2010) Research carried out with children and young people on the autism spectrum, but applicable across children and adults…and may have relevance to others with SEND study - focus •Investigating children’s experience of short breaks (respite care) –Individual child’s level of consultation + involvement in their experience –activities available –quality of care –enjoyment Classroom-based study - data collection: multiple methods
•Semi-structured interviews (parents + teachers) pre-consultation •Field notes of observation (short breaks unit + school) •Results of consultation sessions (notes, recordings) •Teacher’s field notes from short breaks unit •Semi-structured interviews (with teachers) post-consultation + residential workers •Documentary evidence: daily notes, files Classroom-based study •‘Interviews’ carried out by class teachers •Research sample – 3 children and young people, all of whom attended short breaks
–A: 12 year old boy, attends specialist class for children with autism in special school for pupils with severe and profound learning difficulties. Non-verbal and highly aloof –B: 7 year old boy, attends specialist autism unit in mainstream Lower School –C: 14 year old boy, attends class in special school for pupils with moderate learning difficulties Classroom-based study - How did the teachers carry out the ‘interviews’? •A: observation visits to short breaks service provider •B: ‘consultation activity’ as part of schedule; visually organised tasks (at 1:1); structured conversation with visual prompts (quiet area) •C: semi-structured interview at question time –initially without photos, 2nd conversation used photos taken during young person’s stay (more effective) study - focus
•Factors associated with families’ use or of short breaks services •‘Interviews’ carried out with mothers, fathers, siblings and people on the autism spectrum(14 families, 44 interviews) – users and non-users of short breaks •Children/young people on the autism spectrum– –Family life –Likes and dislikes –‘Respite care’ / professionals –Wishes Home-based study - data collection: multiple methods •Semi-structured interviews with mothers, fathers, siblings and children/young people on the autism spectrum
Home-based study •Interviews/consultations carried out by researcher •Research sample – 14 children/young people, aged 7-18 –2 x Asperger Syndrome –1 x Semantic Pragmatic Disorder –6 x Autism Spectrum Disorder –2 x Autism –3 x SLD/ASD •Education settings: –schools for children with moderate>severe learning difficulties (10) –FE college (1) –mainstream (2) –special unit in mainstream secondary school (1) study - How did I carry out the consultation process? •2 non-verbal children with SLD/ASD – could not give consent therefore observed only (in family home & short breaks setting)
•the remaining 12 children/young people – in family home –Initial visit – whole family together (meeting + planning session) –Second visit: 5 children interviewed alone, 7 with at least one parent present •3 interviews – no visual supports (parental decision) How did characteristics of autism impact on consultation process? (1) Major issues: •Problems regarding social interaction –Social anxiety –Aloofness –Problems concerning emotional responses to situations/using these to evaluate events –Problems concerning contexts
How did characteristics of autism impact on consultation process? (3) •Impairments of imagination/need for routine / resistance to change –Problems thinking/imagining beyond their experience (hopes/wishes) –Dislike of change –Poor personal memory and overselectivity –Need for concreteness Other factors impacting on the process •Parents/carers butting in – due to processing issues / habit •Interviewer rephrasing •Acquiescence to adults/carers –Agreeing with carers –Trying to give the ‘right’ answer
What was helpful ? 1. Presenting information visually •Letting the children/young people know, in advance, who I was what I wanted to know, and why •All participants in home-based study had letter with my photo, explaining the research •Letters differentiated for younger/older participants
What was helpful? 11. Triangulating data •Using multiple sources of information •‘Triangulating’ responses with people who knew the children/young people helped clarify, e.g. –when individual's response was factually correct or incorrect •Also helpful in trying to identify reason for factually incorrect responses
What was helpful? 12. Individualisation •In both studies, no two interviews with children/young people with ASD were the same •But…time- and resource-consuming: home-based study took: –4 months to do interviews –Over 80,000 of transcript, 3 months to transcribe –5 months to code before analysis •No ‘one size fits all approach’