Assistance towards accessing a diagnosis service
With the generous support from the Brian Souter Foundation, ATT is now in a position to assist Scottish families by providing a fast track to a diagnosis service. With the large increase in children affected by this condition, families have struggled to get access to diagnosis, with a long waiting list causing further distress and frustration and delaying early intervention. The diagnosis service we provide includes the standardised assessments used for making an autism diagnosis, namely, Autism Diagnostic Observation Schedule (ADOS), and Autism Diagnostic Interview Revised (ADI-R), and is complemented by other cognitive and developmental assessments. These include assessments of non-verbal intelligence, language comprehension, expressive communication, attention, behaviour, “autism level”, and overall neurological development across domains. These complementary assessments are beneficial because they assist in assessing the children comprehensively, guiding further intervention and providing a measure of progress throughout an intervention programme.
The latest statistics for schools in Scotland compendium (Dec. 2010) indicates that 1:104 Scottish children are currently diagnosed with ASD, although head teachers and teachers have reported the figure to be higher due to short fall in diagnosis services. There is a further 1:30 child known to have a speech and communication condition, or social, emotional and behavioural problems, with the strong likelihood that some of these children in fact present with ASD. In total, 1 child in 24 is affected with related developmental and behavioural problems. At the moment, there are no indications of any reduction in the number of affected children. It is generally accepted that the rise in diagnosis is due to a combination of genetic susceptibility and exposure to environment triggers. However no causal agents have yet been identified.
These figures are matched by others conducted elsewhere in the UK. The current UK rate is 1 in 66 children aged 5-11. Evidence of geographical disparity is dramatically illustrated by the recorded rate of ASD in the Orkney Islands. The audit of services for people with ASD identified 91 children with ASD resident in Orkney NHS catchment area, making this the highest rate of autism in Scotland and in the UK, with 1 child in 44 being affected.
The majority of studies suggest a typical male:female diagnostic ratio of 3-4:1, with very few of the girls diagnosed being of the high functioning type. Yet recent publications suggest that women and girls are particularly under-diagnosed because of the relative subtlety of their presentation. This is an observation we have also made with an increasing number of young adult women coming forward seeking help in understanding the nature of their social and developmental difficulties. These young women have essentially fallen through the net of the diagnosis service, because their presentation is not typical of that of high functioning autism in boys. Commonly these women have been diagnosed with an eating disorder when the core of their difficulties is in fact ASD.
Early intensive behavioural interventions have helped many ASD children to acquire the core skills they are lacking and enable them to integrate successfully into the mainstream school system. The lifetime cost of autism has been estimated to exceed £2.4 million per individual.
Based on the above findings Scotland faces a lifetime care bill of between £40.2bn (Scottish figures) and £175bn (if the English prevalence is accepted as a more accurate figure for Scotland).
‘The age of autism’ presents an enormous challenge and ATT is at the forefront of organisations trying to find ways of improving the life and prospects for people with autism.