Parents Caring for a Child with Autistic Spectrum Disorder (ASD) who use English as an Additional Language: Their Experiences of Health and Education, and Societal Responses

Introduction
Little is known about the experiences of parents caring for a child with Autistic Spectrum Disorder (ASD), who use English as an additional language (EAL). This study aimed to discover some of the barriers facing these parents who are resident in the UK but who were born in a low income, low middle income, or upper middle income country (LUMIC) in terms of their receiving help and support with their child‟s condition.

Methods
A qualitative approach was taken with a purposive sample of seven participants born in a LUMIC who were interviewed by telephone or in person. All telephone calls were conducted in private, with the researcher and participants being in their own homes. One face to face interview was conducted in a quiet space within a café, and in two cases, the participant‟s home (please see Appendix 1 for further details). All parents were asked about their experiences with health and education services in their country of birth and in the UK, and with society more generally. Interviews were recorded, transcribed and coded using thematic analysis to identify and refine major themes in the data.

Findings
Healthcare in LUMICs was limited and professionals tended to have a poor understanding of ASD. In the UK, ASD was better understood, but waiting lists were lengthy for diagnosis and treatment. Educational needs of the children in the UK were not always understood or met by professionals; parents had to battle for their child‟s rights, but often needed help to do this, which was difficult to access. Parents having EAL was not detrimental to their accessing health or education services, due to participants mostly having a moderately good grasp of English. Issues arose, however, in participants being fully able to understand ASD, as it was commonly unheard of in LUMICs. Parents sometimes felt stigmatised by, or encountered hostility from, wider society owing to their child‟s ASD.

Conclusion
Both in the UK and LUMICs, greater emphasis should be placed on training health professionals, to improve their diagnosis and understanding of ASD. Public awareness-raising programmes are needed to reduce stigma. Cutting waiting times for assessment and treatment would improve parental satisfaction with services. EAL users would benefit from bilingual information to share with extended family members in LUMICs as this would enhance familial understanding and provision of support around ASD.