'My brother likes meeting new people, but don’t ask him any direct questions': involving adults with autism plus learning disability in a qualitative research project

TY - JOUR

T1 - 'My brother likes meeting new people, but don’t ask him any direct questions'

T2 - involving adults with autism plus learning disability in a qualitative research project

AU - Tozer, Rosemary Jane

AU - Atkin, Karl Michael

AU - Wenham, Aniela Michelle

PY - 2014/12

Y1 - 2014/12

N2 - Adult siblings of people with autism and a learning disability have hitherto been largely overlooked by research, policy and practice in the UK. As part of a qualitative study focussing on adult siblings, we met twelve people with autism plus severe learning disability with their brother or sister. Individually tailored resources were used to make the meeting accessible and positive. Sibling involvement was essential to the participation, and inclusion of adults with autism plus learning disability strengthened the research findings, making them more valid and more relevant to policy and practice. This article describes our experiences of facilitating this involvement, the methods used and understandings gained, with the aim of encouraging practitioners and researchers to do likewise.

AB - Adult siblings of people with autism and a learning disability have hitherto been largely overlooked by research, policy and practice in the UK. As part of a qualitative study focussing on adult siblings, we met twelve people with autism plus severe learning disability with their brother or sister. Individually tailored resources were used to make the meeting accessible and positive. Sibling involvement was essential to the participation, and inclusion of adults with autism plus learning disability strengthened the research findings, making them more valid and more relevant to policy and practice. This article describes our experiences of facilitating this involvement, the methods used and understandings gained, with the aim of encouraging practitioners and researchers to do likewise.

KW - autism

KW - COMMUNICATION

KW - FAMILY SUPPORT

KW - learning difficulties

U2 - 10.1111/bld.12073

DO - 10.1111/bld.12073

M3 - Article

SN - 1354-4187

VL - 42

SP - 292

EP - 300

JO - British Journal of Learning Disabilities

JF - British Journal of Learning Disabilities

IS - 4

ER -