The needs of children on the autism spectrum and their families: Exploring household costs and factors impacting access to resources

The social security benefits system in the UK acknowledges that families raising children on the autism spectrum incur additional costs. However, more research is needed to understand the extent and nature of family-level costs. This study explores, from the perspective of families, what children on the autism spectrum need, and what implications these needs can have for family spending requirements. The study also relates families’ direct and indirect costs to their interactions with schools, formal support services and employment. 

The study drew upon semi-structured interviews and deliberative focus groups. Combined, the methods worked to explore the needs of children on the autism spectrum, and what implications these needs may have for family-level costs. Focus groups were built upon the consensual budget standards approach to ask parents what additional everyday goods and services children on the autism spectrum need, from a selection of categories. It was also the aim of the study to set these needs within the context of how families’ interactions with formal and informal support structures, and their employment experiences, influenced their financial experiences. To do this, a different set of parents, and some children on the autism spectrum, were interviewed. 

The findings from this thesis suggest that the additional resources required to meet the needs of children on the autism spectrum are higher than is indicated in previous studies. The use of the consensual budget-standards approach, alongside baseline data from a comparable study (Davis et al., 2020) demonstrated that costs can be identified which have otherwise been hidden. These additional costs are part of broader financial constraints and dilemmas experienced at a family level. For example, it is found that children on the autism spectrum and their families are not adequately supported by formal services, and these provision inadequacies generate additional costs for families. Adding further financial pressures, barriers impacting the employment of parents are identified, which not only include child- and household-specific factors, but also factors relating to employers, schools and children’s services.