CYP Now - Additional Family Costs for Children on the Autism Spectrum

Children on the autism spectrum and their families face high financial costs but cost estimates to date have not included everyday items such as clothing, furniture and toys. This study, by Loughborough University and children’s disability charity Family Fund, set out to explore the additional cost of providing everyday goods and services that meet children’s needs.

The study suggests everyday non-specialist goods and services cost families at least an extra £51.10 per week. Picture: Ascannio/Adobe Stock

Published by Family Fund

Method

The study focused on items used to calculate the Minimum Income Standard (MIS) – the income UK families need to have a socially acceptable standard of living, based on the views of members of the public. Children with autism may have sensory, emotional, developmental or physical needs that mean they must have personal and household items of a higher quality. They may need a higher number of items and items may need to be replaced more often.

First of all 19 families with children with autism were interviewed to help identify essential goods and services. Parents from across the UK then took part in four focus groups – comprising five to eight parents each – to look at the original specifications for these items as set out in the MIS and discuss what, if anything, would need to be changed to meet the needs of a child on the autism spectrum.

Key Findings

The study suggests everyday non-specialist goods and services cost families at least an extra £51.10 per week – adding up to more than £2,650 in additional costs per year.

It found parents and carers raising children with autism need to spend at least 60 per cent more on items that meets their child’s needs.

Children might need softer, more expensive clothing and bedding to meet their sensory needs. Regular or occasional incontinence meant families needed large quantities of bedding or waterproof-lined throws for furniture.

Meanwhile, physical issues such as dyspraxia and hypermobility, which often go hand in hand with autism, increased the risk of accidental damage to personal and household items.

The performance of digital devices was often important to children on the spectrum who use them for social participation, a form of escape or to support communication and development needs. Basic devices may not be suitable and sharing posed challenges.

Families also described the importance of keeping the home environment consistent and the need to buy duplicates of many everyday items such as cushions and blankets in case they needed to be washed or got damaged.

When it came to standard leisure activities, children may not be able to participate in group sessions such as swimming lessons and may need one-to-one sessions.

Families who took part in the research said they worried about not being able to afford all the specialist and non-specialist goods and services their child needed.

Parents regularly had to make difficult decisions about which goods and services to prioritise. The continuous struggle to manage finances was stressful, particularly for families on low incomes.

Implications for practice

The study shows it is possible to measure the extra everyday costs faced by families with neurodiverse children, which can then be used to inform policy and improve support.

It only focused on selected items so more detailed research is needed to establish the full extent of additional costs.