Qualitative analysis of the experiences of autistic people and their families

Abstract

Systematic Review - Parental experience of autism in India
Research concerning autism in India is a growing, and current literature suggests that the prevalence of autism is increasing year-on-year. However, a relative lack of public spend, and stigma and discrimination associated with disabilities and difference, means that there is a lack of health provision for autistic people and their families, and these families are also subjected to negative judgements from society. The aim of this systematic review was to synthesise qualitative research concerning parental experiences of autism in India, considering the implications for future research, policy and practice. A qualitative systematic review was conducted using thematic synthesis, and analysed six papers with a total of 80 participants. The analysis found that the parental experience of autism in India was made up of four themes: (1) misunderstanding autism, (2) negative attitudes toward autism, (3) largely difficult experiences with services, and (4) specific challenges parenting an autistic child in India. This review concluded that there is limited research into autism in India, and as such further research needs to be conducted to consider the culturally-specific presentation of autism in India, services outcomes, and experiences of autistic people, their caregivers, and service providers. It is also noted that India has work to do, both in terms of policy and practice in order to improve understanding of, as well as health provision for autistic people and their families in India.

Empirical Paper - Autistic People’s CBT Experiences
CBT is the recommended intervention for autistic people with mental health difficulties. A growing body of research suggests that, because of the specific difficulties faced by autistic people, CBT may be difficult for them to access, and thus to be reasonably adjusted for best engagement and outcomes. However, much of the research does not include autistic people’s voices. This study looked to address this gap in the literature. This qualitative research looked to gain insight into the question: “How do autistic people experience CBT?” in the form of semi-structured interviews with five autistic people. Interviews were analysed using Interpretative Phenomenological Analysis (IPA). IPA revealed autistic people’s experience of CBT were made up of three superordinate themes (along with 12 subordinate themes): (1) “Useful aspects of CBT”; (2) “CBT not a good fit for autism”; and (3) “Inaccessibility of services”. While autistic people noted some benefits of engaging in CBT, such as learning more about themselves, and being better prepared for further therapy, there was an overall feeling that CBT was not a good fit, and was not adapted appropriately for them because of a lack of knowledge, awareness and training with regard to autism within services. It was also noted that they felt services were not able to make the reasonable adjustments necessary for better accessibility. This has important clinical and academic implications, and suggests that the structure of service provision for autistic people needs to be better supported or reconsidered entirely.

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