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The CulturAutismo onlus Manifesto

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CulturAutismo is an association of specialists who work with subjects on the Autistic Spectrum, their families and other autism professionals.
Its founders believe that public understanding of any particular condition helps to improve the quality of life of all people affected, both personally and professionally.
This means opposing factors that go against improvements in the quality of life of people with Autism Spectrum Disorder (ASD) and their families, through professional commitment and, when necessary, through promotion of social change.
Such change may take different forms: modifying public perception of autism, but also improving the daily lives of those living with the condition and making it easier for them to access the services they need.
The founders of CulturAutismo believe that autism specialists must give their full support to individuals with ASD and their families in defending their rights and expressing their aspirations for a better quality of life.
In this sense, the founders of CulturAutismo see an important advocacy component in the association’s mission: autism specialists should work side by side with autism rights advocates – those living with ASD and their families – in demanding their rights. The association, encompassing specialists, people with autism, their families and other interested parties, aims to amplify the voices of those with ASD but not to speak for them.

Inspiring principles
“Neurodiversity” as a condition of human development: by “neurodiversity” we mean development that is qualitatively different from “typical” development, biologically determined and not necessarily considered a “disease”. “Typical” and “atypical” are statistical considerations, not value judgements.
Autism as a “spectrum” of conditions: autism could be better defined in the plural – autisms. These are people with very different characteristics in terms of cognitive ability and capacity to adapt, but who share some distinctive features in their social and language development and in their interests.
Knowledge of autism comes from “inside”: those working in the field of autism must not stop at the behaviour they can see, even though that is all they can observe, but also learn from those on the spectrum who can speak or write, trying to understand the condition “from the inside”.
Psychoeducation as the intervention of choice for autism: at the moment psychoeducational approaches are considered the most effective, focusing on behaviour and cognitive skills, and involving all of the people who take care of the person on the spectrum, including his or her family.
Family involvement: we believe that the family should be involved at all stages from diagnosis, through assessment, to psychoeducational therapy and training. The family has a central role in decision-making. There must be mutual respect for roles and competences, with the specialist involving the family (parents, brothers and sisters, and other family members) in the psychoeducational programme, at all times respecting and preserving family bonds and the distinctive nature of the home environment.
Importance of assessment: the specialist must ensure that objective assessments are carried out on a regular basis by people not directly involved in the treatment of the person with ASD. Assessment tools should be internationally recognised. They should avoid general considerations, not tailored to the individual, and should have practical consequences for the Individual Educational Plan (IEP).
Accuracy of diagnosis: it is vitally important that parents receive a diagnosis for their child and/or that the autistic person him/herself receives it, so that they can gain access to specialist services, and can build their knowledge of autism and of their rights as quickly as possible. The diagnosis must be made by a team (not an individual specialist) based on the indications provided by the World Health Organisation(WHO) and the most recent version of the DSM (Manual for Statistics and Diagnosis of Mental Disorders, Italian). The diagnosis must provide practical guidance, rather than merely “labelling” the individual.
Personalising objectives, strategies and procedures: objectives, strategies and procedures must be designed and carried out “made-to-measure” for every individual person on the spectrum. Starting from available literature, the specialist must be prepared to adapt general curricula and to review his or her approach whenever this seems useful, remembering that plans are made for people and not the other way round.
Sharing of objectives. treatment objectives should be expressed in an operational and understandable manner, as well as communicated, discussed and endorsed by all the parties involved in education, since we believed that sharing is the only possible way to streamline the results of psychoeducational intervention, and that only clearly expressed objectives allow a proper assessment of the effectiveness of the intervention.
Rejection of aversive methods of intervention: since we do not attribute to punishment any educational value, we reject any method of intervention which is detrimental to the feeling of people on the Autistic Spectrum or their family members. On the same grounds, we reject any intervention that focuses on problematic behaviors, if performed without having made an assessment and without having considered a preventive intervention aimed at encouraging the acquisition of skills.
Adoption of a long-life support perspective: we believe it is essential that the specialist adopts a perspective that includes the entire life-cycle of the person on the Autistic Spectrum and their families, possibly gaining the experience enabling them to follow adults as well, having in mind the long-term effect of their intervention, and being available to provide continuity both in the various situations of life, and through the time.
Compliance of proposals to the chronological ages: Treatment proposals for people on the Spectrum should always be appropriate to the chronological age, with respect to various characteristics, such as effort time or materials, both for children – who have to be regarded first of all as children and only subsequently as autistic children – and for adolescents and adults who have a right to a job, to a place of living, to gratifying human relations, to a meaningful leisure time, and to not being infantilized.
Specific education and lifelong learning: the specialist should give importance to further and continued education, achieving over time the “to know, to know how to do, to know how to be” skills, which are essential to the profession. We are convinced that both theoretical and practical education is necessary. Such an education should be focused on autism, performed by professionals endowed with skills and experience, and arranged in accordance with the qualifications recognized in Italy for the different professionals involved in diagnosis, assessment and treatment in favour of people with the Autistic Spectrum disorders.
Interest in Autism and a respectful and cooperative attitude: The specialist should be animated by a genuine interest both towards people on the Autistic Spectrum and their family members and colleagues; in particular, we believe that the specialist should be able to recognize the diversity of the person on the Autistic Spectrum, respecting their choices and being able to give support aimed at achieving a better quality of life, without forcing their individuality in our own values.
Attention to generalization and to life contexts: the specialist who deals with people on the Autistic Spectrum should not simply operate in a closed therapy room, but rather let people who cope with the child enter (literally) in their room, and enter themselves in the places where the child lives, while the adult companion should operate in real life environments and ensure the generalization, namely the transfer of skills to multiple contexts and persons.
Openness to dialogue, exchange and supervision: the specialist should be open to a continuous dialogue with colleagues, as well as to exchange, mutual supervision and work in pairs or in groups, being aware that no one can work alone: working together with others represents a value, a constant drive to professional growth and a means of protection from the stressful aspects of the profession, as well as a demonstration of a special care to the persons followed.
Consistency with the international literature, commitment to accurate information and adoption of an empirical attitude: it is essential for specialists to undertake and to be familiar with updated scientific literature, not only keeping it in the highest consideration, but also taking it on themselves care to promulgate correct information, accepting that their actions are subject to verification.