More than £215 extra-a-month to raise a child with autism

Newswise — The first study into raising a child on the autism spectrum using the Minimum Income Standard (MIS) approach, has found that families and carers face costs of more than £2,650 each year – to cover everyday essentials that meet their children’s needs.

Autism is a lifelong developmental disability affecting children’s communication, behaviour and how they process touch, sounds and tastes (known as sensory processing.)

The research, by Dr Chloe Blackwell at the Centre for Research in Social Policy (CRSP) at Loughborough University and leading children’s disability charity, Family Fund, looks at the higher cost of everyday, non-specialist, household and play items like furniture, clothes and toys, which need to be commonly replaced and of higher quality, for neurodiverse children’s needs.

Parents and carers raising children with autism need to spend at least 60% more for higher quality items, replaced more regularly, due to how their children use them.

These costs add up to an additional spend of more than £51.10 each week for an acceptable minimum living standard when compared to the same everyday items for families with neurotypical children.

These are unavoidable costs as they are required to meet the sensory, physical, emotional and developmental needs of children on the spectrum, who use items differently as part of their condition.

The report, My kids need what they need. Additional family costs for meeting the everyday, non-specialist needs of children on the autism spectrum (attached), builds on the Minimum Income Standard research, which is used to set the Real Living Wage in the UK, and which is updated yearly to reflect inflation and changes in public agreement about what is needed for an acceptable standard of living.

Dr Chloe Blackwell, of Loughborough University, said: “Identifying the extra costs required to raise a child on the autism spectrum is an important first step in pinning down the additional incomes these households require.

“Sensory, physical, emotional and developmental needs mean that children on the spectrum use and experience things like clothing and household items differently, and these needs often mean a higher quality, quantity and replacement rate of everyday items is required.

“A child on the autism spectrum may need softer clothing for example, to meet important everyday sensory needs.

“And clothing items may need to be replaced much more frequently as the child may subconsciously pick, pull or chew areas of their clothing, either through anxiety or sensory-seeking needs.

“The performance of digital devices is often important to children on the spectrum too, for social participation, a form of escape, as well as for developmental and communication needs.

“Keeping the home environment consistent, looking and feeling the same, can be vital for the child’s wellbeing.

“To meet this kind of need, families describe needing to purchase duplicates of many everyday household items, in case they need to be washed or become damaged, including cushions, cushion covers and blankets.

“The difficulty for many families raising children on the autism spectrum is that their finances cannot stretch to match the spending required, which is a source of significant frustration and stress.”

Table showing sample of research costs:

Family Fund is the UK’s largest grant-making charity for disabled and seriously ill children.

Dr Abby Dunn is Head of Policy, Research and Evaluation at the charity which funded the research.

She said: “Autism is a wide-spectrum disability and everyone with the condition has different needs which drive up costs.

“With only 8% of parents and carers able to work as much as they want due to caring responsibilities, they’re now struggling to afford the essential things their children need, to cope with anxiety, communicate and enjoy relaxation and play.

“We are all living through a cost-of-living crisis but this research is further evidence that families raising a disabled or seriously ill child are disproportionately affected and having to go without the basics for their child.”

Family story

Morag Batton is a grandparent carer to 11-year-old Alexa, in Ayrshire, who is on the autism spectrum. She also has learning difficulties, attachment disorder, ADHD, dyspraxia, and hip dysplasia.

Morag explains, “A big cost for us is clothing – Alexa wears incontinence pads so needs larger sizes of clothes to accommodate this. She also chews clothing, especially around the neck, and the tears pull into holes in the machine so need to be replaced. We also have a lot of spillages and stains from food and things like that.

“Alexa bounces a lot as one of her sensory needs. She does this like a much younger child would, but of course she’s now eleven, so broke her bed doing this. Thankfully Family Fund gave us a grant for a new bed and mattress last year which was fantastic, or we would have been saving up for a while.

“She has had several iPads over the years from Family Fund too and they’re fantastic for her school stuff. She has her visual timetable on there to help her understand her routine.

“They also dramatically reduce her meltdowns when she’s not coping, so we do something difficult for her like brushing her teeth, then she gets a ten-minute burst of tablet time, to calm down again.

“However, Alexa does do things that limit how long a device will last, like repeatedly pressing the same button or mouthing the tablet – she’s not doing anything ‘wrong’ by doing that, but they simply don’t last.

“That device is like a friend to her, a companion. She doesn’t understand the games that other kids her age play, she can’t join, so that’s her relaxation and fun. She needs that like any child, which I do wish people understood.”

• Further case studies available on request.