Autistic spectrum disorder (ASD) is a modern enigma. The National Autistic Society estimates that as many as one in 86 children may have ASD compared with one in 2,500 five years ago. And although it appears to run in some families, we have no clear idea what causes it or how best to intervene.
The behaviour patterns associated with ASD are best explained in terms of unusual neurological “wiring” and information processing, leading to children being unable to understand the world around them except in piecemeal, disconnected terms. How, then, to account for the recent increase in ASD diagnoses of epidemic proportions? And what kind of help should be provided for affected families? The question is no easier to answer than the second, although our own recent research has provided some important pointers for the latter.
It is likely that growing awareness in parents and professionals accounts for much of the increase in diagnoses, as well as a broadening of the criteria.
Living with an individual with ASD is extremely stressful for families and the costs of appropriate education and long-term care are inestimable. Doing nothing when an ASD diagnosis is made is not an option for families. Yet the astonishing fact is that most local authorities have no specific provision for ASD in the pre-school years when greatest impact could be achieved.
Our research brief was to design, deliver and evaluate a home-based ASD service ensuring the most effective service for young children and families. The South West Autism Programme (Swap) is funded by Bristol Council and started in September 2000, with data now available from 26 families. Swap tutors work with families and early-years staff on developing each child’s social skills, play and communication. Methods include behavioural approaches, intensive interaction, picture symbols and visual timetables.
Remarkably, all children have made rapid progress and Swap has been effective across a wide range of ability. Baseline assessments ranged from a development quotient (DQ) of 24 – a child with severe learning difficulties – to more able children with a DQ of 100. In the best cases, children made DQ gains of more than 60 points in 18 months. Half the sample showed gains in DQ of 20 points or more while one-third showed DQ gains of more than 45 points. On average, families requested and received 10 hours’ a week intensive service (range 2.5 hours to 25 hours a week).
Significantly, differences in progress were not linked to the intervention time. Children who made the most progress received a combination of services, including support in mainstream nurseries. Twenty-five out of 26 families opted for a combination of approaches tailored to their child’s needs. Perhaps the most noteworthy of the findings is that 16 out of 17 Swap “graduates” (94 per cent) to date have gone on to mainstream schools with varying degrees of support.
All families with an ASD diagnosis require access to some form of early intervention, based on a range of flexible approaches tailored to families’ needs. There can be no excuse for local education authorities not to act on this data. They should work in partnership with parents and other helping agencies to offset the worst consequences of ASD. Even if the ASD “epidemic” turns out to be more virtual than real, service providers must take an active stance. Otherwise they risk being forced, through litigation, to fund services that may not be the most appropriate or effective.
Further details about the South West Autism Programme are available from e-mail: firstname.lastname@example.org
Alec Webster is professor of educational psychology at the graduate school of education, Bristol University.