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Description
Asperger''s syndrome is an element of autism spectrum disorder (ASD). Above all, people with Asperger''s have difficulty with social, sensory, and communication skills. According to the Polish Psychiatric Association (Psychiatria III/2019), the most common diagnosis given today in child psychiatry is in fact ASD. Diagnoses of this kind are given increasingly frequently for adults. Institutional support is not perfect, but it provides specific help and it is a worthwhile option for anybody in need. Unfortunately, a parent or adult given this kind of diagnosis cannot get complete information on all of the options. The education, local government, medical certification system, etc. each operate separately. All-embracing support, addressing comprehensively the question of what to do once the diagnosis has been given, is not available. The project comprises operation of a helpline for people with Asperger''s and autism, their families, and other stakeholders from all over Poland. We will employ two or three people with disabilities (self-advocates with ASD) who will be able to operate the helpline with little organizational support. We will produce an information pack with vital information for people who are newly diagnosed and their families, and train people who are going to work on the helpline. Callers will be given reliable information about autism and where to get help, but will also obtain information about functioning with ASD directly from people who have it. We want to draw attention to the project, and for this reason we are taking great care when making preparations for promotional activities. As a result of the project, 180 people will learn more about the institutional help for people with autism. Two or three people with disabilities will undergo training and will become more self-confident.
Summary of project results
The project responds to the needs of people on the autism spectrum who experience a range of social, sensory and communication difficulties, as well as the needs of their families. Autism spectrum disorder is now the most common diagnosis in child psychiatry and the availability of adult diagnoses has also increased. The support system is not perfect, but it does offer concrete help, something that people with a diagnosis and parents of children on the spectrum are not always aware of. Many people, despite having a relevant psychiatric diagnosis, do not have a disability certificate and therefore cannot benefit from the systemic support available because they have never been made aware of such opportunities.
The project set up an information line for people on the autism spectrum, their families and others interested in autism. The helpline was staffed by four people, three of whom were self-advocates on the autism spectrum, and a therapist. The helpline staff were trained and prepared for their roles and were provided with supervision throughout the project. An essential knowledge pack for people with a new diagnosis and their families was also developed.
As a result of the project, three people on the autism spectrum were prepared to work as self-advocates and also shared knowledge about the autism spectrum based on their experiences. In total, more than 2,100 people used the helpline. Callers received reliable information about autism and systemic support. Some of the most frequently discussed topics included aggression and violence, addictions, depression, social security disability insurance case law, therapy programmes, early childhood development support, diagnosis, sensory integration. Since the end of the project, the helpline has continued to be run by people who were previously trained. Thanks to the project, interest in systemic support has increased.