“My kids need what they need” – Additional family costs for meeting the everyday needs of children on the autism spectrum
Children on the autism spectrum and their families face high financial costs. This study helped us gain a greater understanding of those costs and the pressure they place on families.
About the research
The findings summarised in this report were produced as part of a PhD study funded by Loughborough University, the Economic and Social Research Council and Family Fund. Dr Chloe Blackwell is the researcher in charge of this project.
Background
Children on the autism spectrum and their families face high financial costs. Previous estimates have shown that extra spending on specialist items and private fees for therapies, as well as lost parental income, contribute both directly and indirectly to family-level financial pressures. But, until now, estimates have not included a detailed analysis of everyday non-specialist goods and services, which all children are assumed to use. Examples include non-specialist bedding, technology, clothing and furniture.
This research asked if these everyday items would meet the needs of children on the autism spectrum and, if not, what would need to change about them for the child to be able to meet an acceptable standard of living. The research then explored the extra costs that any difference in specification would incur. The findings were based on the responses of parents raising children with a range of experiences of autism. They were gathered through their participation in deliberative focus groups and in-depth family interviews.
Dr Chloe Blackwell summarises the research: “While it’s broadly recognised that children on the autism spectrum and their families face high financial costs. Until now, cost estimates have not included analysis of everyday non-specialist goods and services.
“Focusing on a selection of everyday items, the study finds that the additional costs of meeting everyday needs are significant. These additional costs are because children on the autism spectrum require personal and household goods of a higher quality, they need a higher number of items, and those items need to be replaced more frequently. These specifications are explained by a range of sensory, emotional, developmental and physical needs.”
Key findings:
- Households with children on the autism spectrum encounter significantly higher costs. This is because of the additional resources required in order for them to meet a minimum acceptable standard of living.
- At least an additional £51.10 per week would need to be spenton everyday non-specialist goods and services to meet the needs of children on the autism spectrum. This was based on a hypothetical 14-year-old child named ‘Holly’, who attends a mainstream school and experiences some aggression.
- Another hypothetical child named ‘Tom’ was found to require at least an additional £53.58 per week to meet his needs. ‘Tom’ is a seven-year-old who uses minimal verbal communication and attends a specialist school.
- Additional costs arise because children on the autism spectrum require personal and household goods of a higher quality. They also need a higher number of many items, and these items need to be replaced more frequently. These specifications are explained by a range of sensory, emotional, developmental and physical needs.
“He needs that sensory (stimulation). So, what he does in bed is he rocks and rolls…throwing (himself) from side to side. There’s only so much that beds can take of that.”
Parent
Note on terminology
This research refers to the child or children ‘on the autism spectrum’. Many advocates and self-advocates prefer autism-first language. However, not all young people and parents participating in this study felt comfortable with this language. Therefore, the phrase ‘child/ren on the autism spectrum’ was chosen. It presents the child first but in a way that is more neutral in comparison to other person-first alternatives.