Autism is viewed as a spectrum disorder. The condition impairs a child’s natural instinct to communicate and form relationships. The autistic child can sometimes withdraw into a world of his or her own.
The degree to which each child is affected varies, but the following characteristics are common:
- difficulty with social relationships
- difficulty with verbal and non verbal communication
- lack of imaginative play
- resistance to change in routines
- repetitive behaviour
- sensory impairment
In its mildest form, people with autism will experience difficulties in engaging with others or coping with day-to-day interactions. They may have repetitive and limited patterns of behaviour and a strong resistance to changes in familiar surroundings and routines. At its most profound, people with autism may be disruptive, unpredictable and may be aggressive to others and/or themselves. They may never acquire spoken language, require constant 24-hour care and may be perceived to be living in a world of their own.
Their life, and those of others who care for them, can be extremely stressful and has driven families to desperation. Two recent surveys have led to the best estimate of the total prevalence rate of autism spectrum disorders being 1 in 100 children under the age of 18.
Baird, G. et al (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism project (SNAP). The Lancet, 368 (9531), pp. 210-215.
Green, H. et al (2005). Mental health of children and young people in Great Britain, 2004. Basingstoke: Palgrave Macmillan. Available to download at http://www.statistics.gov.uk/statbase/Product.asp?vlnk=14116
The estimated numbers have been worked out from the population of the UK as given in the 2001 census: 58,789,194, of whom 13,354,297 were under 18. Based on the 1 in 100 prevalence rate, and corrected to the nearest 100, the estimated number of children under 18 with an autism spectrum disorder (ASD) is 133,500. This also means around half a million family members are directly affected by the condition. (Office of National Statistics 2005). No prevalence studies have ever been carried out on adults.
The most recent survey found only 7,500 specialist places for over 90,000 children with autism in the UK (Jones, G. 2002, Educational Provision for Children with Autism and Asperger Syndrome: Meeting Their Needs, David Fulton Publishers: London).
The emotional cost of autism to families, and the individual with autism, cannot be measured.
Findings commissioned by the Foundation for People with Learning Disabilities shows that caring for autistic adults costs far more than caring for children with autism. The report states ‘the aggregate national cost of supporting children with ASD in the UK is £2.7 billion each year. Most of this cost is accounted for by services used. For adults, the aggregate costs amounts to £25 billion each year. Of this total, 59% is accounted for by services, 36% by lost employment for the individual with ASD, and the remainder by family expenses.
The lifetime cost for someone with high-functioning autism was found to be £3.1 million and £4.6 million for someone with low-functioning autism’. (Knapp, M, Romeo, R & Beecham, J (2007), The Economic Consequences of Autism in the UK, Foundation for People with Learning Disabilities, London).
Dr Andrew McCulloch, Chief Executive of the Foundation, said: “These figures illustrate the real cost of autism and give serious weight to the argument that more resources are needed to intervene early and effectively in the lives of those who are affected by the condition.” “Early intervention would help individuals with autism and their families experience a better quality of life and reduce the high costs incurred in later years, saving public money.”
The prognosis for children and young people with autism who do not receive appropriate education is bleak and of grave concern for parents, who worry about what will happen when they are no longer able to care for them.
Research shows that 90% of people with autism will not do well in life and 60% will be entirely dependent on others during all aspects of adulthood. Fewer than 10% of adults with autism have the basic skills that would enable them to live any form of independent life, such as shopping, preparing meals and managing money. The lack of education available to teach these essential self-help skills means that generation after generation of young people and adults with autism are excluded from making a meaningful contribution to society.
The Jigsaw Trust is trying hard to change this by delivering and promoting excellence in autism education.
“Mankind owes to the child the best it has to give”
United Nations Declaration