Autism, beyond the wall of residences: for the 'after us' a new life model is needed
Guaranteeing each person the right to 'feel at home', stepping out of the shadow of support that is too often just a car park for the invisible: this is the challenge that holds together the need to overcome segregating models and the responses to the support needs of families
Autism in Italia is today at a crucial crossroads: on the one hand the need to overcome segregating models, on the other the urgency to give concrete answers to thousands of families living in the anguish of 'After Us'. The heart of the problem lies in the quality of a vision that must stop being purely welfare and become enabling. It is not enough to reduce beds to talk about de-institutionalisation. The issue today is to transform structures into 'life projects', guaranteeing dignity and support even to the most complex cases.
The recent Guidelines for the treatment of the autism spectrum in adults, issued by the Istituto Superiore di Sanità, is very clear in this sense: it defines with four recommendations the priority elements of the Project of Life (Pdv) and a specific recommendation on the best living conditions: "by living solution we mean the place where the person lives and where his Pdv is carried out in function of his own well-being and emancipation, planning an accompaniment towards autonomy". The recommendation is therefore in line with the dictates of the Convention from which it draws its inspiration.
The de-institutionalisation node
It is quite clear that if the accreditation criteria remain those of 'simple reception', the risk is to create mini-institutes where persons with autism live with other disabilities without a specific project, ending up acquiring stereotypes of others instead of developing their own autonomy. Even the UN Convention, born in an era of strong segregation, deserves a reinterpretation today: de-institutionalising should not mean closing all forms of residence, but eliminating the 'institution' model. For those with high support needs, depriving themselves of a protected place would be dramatic. The challenge, strongly launched by Angsa (National Association of Parents of Persons with Autism), is to transform the residence into a 'logistical base' from which to participate in society.
The complexity beyond the label
On the other hand, autism, as defined by the Dsm-5-TR manual, is not a monolithic block. It is a universe of extremely heterogeneous conditions where co-occurrences are the norm, not the exception. Approximately 30% of people with autism suffer from epilepsy, often drug-resistant; another 30% have severe intellectual disability, frequently accompanied by sleep and eating disorders and self-injurious behaviour. Simply categorising these people into 'levels' is not enough: care needs vary drastically and often 'level 3' cases, the most complex, are the ones that have the hardest time finding care, excluded from a system that, for the same fee, prefers to manage less problematic situations.
The proposal is to define new life-based accreditation criteria. Here they are
