‘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

Abstract

Accessible Summary• People who have difficulties in communication and understanding are often excluded from research which is about them • In our research, we wanted to find out how people with autism plus learning disability get on with their brothers and sisters once they are grown up • We met with twelve people with autism along with their brother or sister without disability in a way that we hoped would make them feel relaxed • Meeting the brothers and sisters with autism was important, and it helped us understand their relationships much better. It also helped us make suggestions about how they and their siblings could be better supported. SummaryAdult 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.

The Child with Autism Spectrum Disorder: The Perceptions of Siblings

“…Often, they consider themselves as a second parent yet they do not obtain any type of compensation for the support they provide. According to Tozer et al (2013), this result is similar to that found among siblings in the general population, yet more particularly, brothers and sisters of children with ASD as feel they have increased long-term commitment and responsibility for their siblings.…”

“…A sense of uncertainty and tension is evident in some studies with adolescent (Opperman & Alant, 2003;Petalas et al, 2009), and adult siblings (Tozer, Atkin, & Wenham, 2013). Feelings of embarrassment, frustration, and anger occur when siblings of children with ASD feel compelled to deal with the attitudes and reactions of others, and even when they need to explain their sibling's condition to their peers (Petalas et al, 2009).…”

‘Recognized, Valued and Supported’? The Experiences of Adult Siblings of People with Autism Plus Learning Disability

“…The purpose of the meeting was to assess the emotional attachment and mutual understanding between siblings and enable the researchers to get a sense of family relationships (see Tozer et al . ).…”

Do health consultations for people with learning disabilities meet expectations? A narrative literature review

“…However, more research is needed on the reluctance of some service users and their families to engage with health services, and more interview studies are needed to identify issues that service users may feel too embarrassed to discuss in public. In addition, interviews using augmented forms of communication are needed for people who find it difficult to engage in verbal conversation (Tozer, Atkin, & Wenham, ). Additionally, there is some evidence that some GPs may perceive health checks as a burden that detracts from care for other patients (Chauhan et al., ), and research into their views and attitudes would be useful.…”

“…However, more research is needed on the reluctance of some service users and their families to engage with health services, and more interview studies are needed to identify issues that service users may feel too embarrassed to discuss in public. In addition, interviews using augmented forms of communication are needed for people who find it difficult to engage in verbal conversation (Tozer, Atkin, & Wenham, 2014).…”