THE lifetime cost of caring for a person with autism is around £1.31 million, research has revealed.
Providing support from the cradle to the grave costs from £830,000 up, depending on the severity of the disorder.
It is estimated around 58,000 people have autism in Scotland with more than 11,600 thought to be over the age of 60.
Including families, autism touches the lives of 2.7 million people across the UK with 700,000 people diagnosed with the disorder.
The condition is neurodevelopmental and is marked by impaired social ability, especially communication, and repetitive patterns of behaviour, interests or activities. Because it changes behaviours and affects how the person interacts with society, the costs to families can be huge.
Researchers at London School of Economics and Political Science assessed the care cost to families both in the US and the UK in 2013.
It found supporting a patient with autism spectrum disorder (ASD) and intellectual disability over a lifetime was £1.31m in the UK and £1.43m in the US.
The cost for a patient with an ASD but without an intellectual disability was £830,000 in both the UK and US. Initially, the most expensive element is the need for special education services and parents having to take time off work to provide care.
As the person with autism grows up, the highest costs are related to paying for residential care or organising supportive living arrangements.
The research, published online at JAMA Pediatrics, said: “There is an urgent need for a better understanding of the effectiveness and cost-effectiveness of interventions and support arrangements that address the needs and respond to the preferences of individuals with ASDs and their families.”
Carol Povey, director of the National Autistic Society’s Centre for Autism, said: “The NAS is acutely aware of the need to put in place effective support from early diagnosis through to old age.”
Ann Brown, chief executive of the Lothian Autistic Society, said: “A diagnosis of autism can take place as early as two years of age so it is important to look at the emotional support as well as intervention and care.
“There’s no denying that looking after someone with autism can be demanding, and it can put considerable strain on relationships. ASD affects many people differently, some being able to live independently, others needing specialist support.
“It is our experience that parents and carers find it difficult to entrust the person they care for to anyone else and it is very difficult to find someone who has the experience and knowledge of autism to care for their child.”
Autism Initiatives national director for Scotland, Richard Ibbotson, said: “Autism is a lifelong condition. However, we know that providing the right support, information or advice at the right time can have significant impact and reduce needs.”
‘We spent all we had giving them what they needed’
Asma Haq has two boys, both are autistic. Before they had children Mrs Haq and her husband Rizul, ran their own off-licence in South Queensferry.
When teenagers Rameez and Faizan were diagnosed with autism, the couple sold their business so they could spend valuable time bringing up their children.
“Rameez was two when he was diagnosed with autism and Faizan was four. At first we tried to keep our business going – but living in Edinburgh and travelling to our shop as well as trying to care for two little boys who really needed us there proved to be too much.” said Mrs Haq.
“The early years were very tough. We didn’t have much money coming in. I was eventually told about how to claim for Disability Living Allowance.
“We took them to so many things, swimming and judo, made sure they were settled in schools, attended every single event. We spent every single penny we had on making sure they had everything they needed to thrive.”
Now the boys are pupils at Kaimes school in Edinburgh, which caters for children with special needs.
“It’s not been easy, but we chose caring for our children over our careers which meant financially it’s been a real struggle,” Mrs Haq said.