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PILOT PROJECTS ON EMPLOYMENT OF PERSONS WITH AUTISM SPECTRUM DISORDERS PROPOSAL VP/2010/017/086

E.5 Description of the action

SWANS

Sustainable Work for Autism Networking Support Experts estimate that two to six children out of every 1.000 will have autism, males more frequently than females. The autism spectrum disorders are estimated to be the second most common serious developmental disability after mental retardation/intellectual impairment. The ASD involves development limitations such as communication and social interaction impairments, restricted interests with repetitive behaviour and learning difficulties, as a consequence. The impact of having a developmental disability is immense for the families affected and for the community services that should provide intervention and support for these families. This impact becomes harder when the child become adult, with lack of specific training and assistance to reach own full potential and be integrated in a social environment, specifically at work. Autism Spectrum Disorders are typically diagnosed around age 3 years. The children are commonly treated by the health and social services in collaboration with the families and subsequently at school, with help of a remedial teacher. In this way in all the European countries, as well as in the USA or other so called “developed countries”, a pedagogical course is outlined inside the educational institutions, with a specific focus on communication learning towards the school environment, such as a gym training with the external world. Much more lack in integration is reserved to young people after the school period. Only few experiences have been still leaded with a scientific approach, such as “T.E.A.C.C.H.” methodology in the USA, mainly addressed to so called “High Functioning” ASD persons. The TEACCH methodology has introduced in the USA a trend on developing assistance activities aiming at stimulating a progressive integration of the ASD youngsters and adults, with specific focus on “high functioning” subjects, after their secondary education. In Europe there are some experiences in supporting ASD persons at work, such as i) Prof. Theo Peters and Hilde DeClercq at Opleidingcentrum Autisme Antwerpen, in Belgium, specific focus on training for tutors supporting ASD subjects at work, ii) Hélène Ripolli, with the association “Lea pour Samy”, in France, with a social involvement of families and public institutions, iii) Prof. Patricia Howlin, at Psychiatry Institute of King’s College, in London and Trustee of Research Autism Foundation, with a two-year supported employment project for 10 high-functioning ASD adults, also working in collaboration with St.George’s Hospital. Starting from this state-of-the-art, the Mountain Community Association of Trasimeno - Middle Tiber Municipalities, engaged since many years to favour the integration at work of people with both physical and mental disabilities, has launched an initiative, the SWANS project (Sustainable Work for Autism Networking Support), in collaboration both with public health services (Local Health Unit N.2) and a consortium of cooperatives (Consorzio Auriga), with a large experience in supporting families and public social services with people affected of different handicaps, also including ASD. The Health Local Unit (USL) 2 psychiatric services have developed since many years assistance and support services and programmes in favour of children with mental disabilities, among which ASD. These activities are foreseen in the planning performed by the Council for Health of Umbria

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PILOT PROJECTS ON EMPLOYMENT OF PERSONS WITH AUTISM SPECTRUM DISORDERS PROPOSAL VP/2010/017/086

Region, with psychiatric and practical support to the ASD children. Unfortunately when the autistic children grow up, there are no specific health and social programmes managed by the public institutions accompanying, assisting and integrating ASD people in their daily living as youngsters and adults. This lack of assistance is very hard, after leaving the school environment, for the autistic subjects and their families at risk of discrimination, stigma and isolation. The ASD common behaviour background, such as communication and learning difficulties with a social environment, due to lack of verbal tools and gesture reciprocal comprehension, noise intolerance, fixed and univocal interests, routine context partiality, are considered as susceptible of positive evolution if developed in a personal tailored training, starting of peculiarities and specific skills to be acquired. In this context of reference the project aims at outlining a step-by-step path, with the main objective to prepare the ASD subjects to understand and improve own skills before loosing at this stage, after having learnt to cooperate at school, the life opportunity to be socially integrated. A broken line between the school and the work environment could even produce a regress to preschool aptitudes. The acronym “SWANS” means to tackle the discrimination and give opportunities for the “ugly ducklings” to reveal their beauty and abilities. The SWANS project is designed, in accordance with the Progress Programme, aiming at reducing the gap of people with disabilities for equal opportunities at work, and with specific reference to the call for proposals VP/2010/017 “Pilot projects on employment of persons with autism spectrum disorders”, to contribute to the environmental enlargement of ASD adults towards the work experience. In this perspective the SWANS project aims at transferring the previous innovative experiences from Belgium, the Netherlands and United Kingdom to Italy in a socio-economic environment including health and social institutions, families, GNO associations, businesses, also taking into account of the social and political organisation in France of concrete opinion movement in favour of ASD people integration in the society. In the 1st phase a data base on social integration of ASD subjects will be set up, with a specific focus on empowerment of the supporting staff (tutors) and work experiences (WP leader Prof. Patricia Howlin, at Institute of Psychiatry, King’s College London). In the 2nd phase an adaptation and transfer of supporting staff training will be made by involving 21 tutors and 3 qualified ASD programme managers (neuropsychiatrists and psychologists) in Perugia-Trasimeno-Middle Tiber area (WP leader Dr. Theo Peeters, Albatros Opleidingcentrum Autisme, Antwerp). In the same period (3rd phase), a group constituted of ASD evaluators will examine, together with the project coordinators, the individual skills of 40 ASD subjects (60% of them high-functioning), of which 30 in Italy and 10 in Belgium, also in benchmarking with the case studies observed by Patricia Howlin in UK; for the Italian ASD subjects a group of medical and social experts, leaded by the coordinators, will evaluate the placements (WP leader USL2). Meetings involving all the associations, institutions, families and businesses will be organised by the project promoter Comunità Montana, in order to reinforce the social environment. In the 4th phase the ASD subjects considered, under assessment, able to be tested within a work context (also including PC and new technologies use), will be supported at work by the tutors for 12 months, two/three hours average a day. The meetings with the partners from Belgium and UK will be focused on the beginning and final phase of the work experience, in order to assess together the whole period (also videoconferences will be used for direct communication). At the end of the general trials, 10/15 ASD subjects, will be chosen for a further six-months work placements (four within the project period, in the 5th phase). In the last and 6th phase, an International Final Workshop and Conference will be organised by the Council for Health of Region Umbria, with a call for papers of experts, also involving the French association “Lea pour Samy” in a specific workshop for families and institutions. The conference proceedings will be edited, published and disseminated, as well as the project results. The SWANS network for “ASD subjects at work” will be launched and proposed for further development of project experiences at international and European level.

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