Future Research – Background

Autism is no longer regarded as rare. It affects 1 in 100 children.

It is estimated 500,000 people are affected by autism in the UK today, yet little is known and even less is done to help.

Individuals with autism and their families report social exclusion on a daily basis. The demands of coping with a child with autism will place huge strains on all aspects of life. The child may have severe communication and behavioural problems, sleep problems, eating problems, restricted routines, sensory sensitivity or have other physical problems.

Families may collapse under this strain, resulting in family breakdown or divorce, ill health, problems in maintaining employment and relationships with the local community. In a few extreme cases the parent has taken their own and the child’s life.

Parents report that the challenges they face are often compounded by having to battle for recognition of their child’s difficulties and even the most basic entitlement to services and support. Additionally, they may get little informed help or be torn by conflicting advice and guidance. Once the child starts school there may be other problems, especially if the school is not experienced or equipped to provide the right environment. Consequently large numbers of children with autism are excluded from school or fail to fulfil their potential.

In adulthood we know of many individuals living lonely, anxious and unfulfilled lives. Relatively few have jobs and even if they do this may be below their academic and intellectual potential. A considerable number may be living with ageing parents, who are themselves socially isolated and many more in contact with inappropriate mental health services. Tragically, some have committed suicide and others have come into contact with the criminal justice system.

Research Autism believes that the huge financial and human costs of autism are not reflected in the current level of research in interventions. By leaving families to muddle through on their own, with often catastrophic results, society ends up having to pour £billions a year into the social consequences.

Costs are incurred across all areas of government, primarily special education, children and health and social care for adults but other costs across DWP (benefits and employment costs, including opportunity costs related to problems in employment of individuals with autism and the families of individuals with autism) the Home Office, numbers and costs of those in the Criminal Justice System.

Hidden costs of autism are those associated with the high out of pocket expenses of families. There are reports of families remortgaging their homes or taking out loans to fund expensive treatment programmes and the huge effects of an autistic sibling on the social and academic progress of other children.

From our research and through anecdotal evidence the level of research spending does not reflect the social and economic burden of autism.

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Last Updated : 31/10/2008 Back to Top

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Future Research – Background