World Day

Autism, from early diagnosis to treatment: an uphill road for 500,000 children

Italia does better than other countries in the ability to intercept the disorder early, but too many regions lack an integrated network of services and personnel while the 'life project' bet is still to be played out

by Barbara Gobbi

 New Africa - stock.adobe.com

5' min read

Translated by AI
Versione italiana

5' min read

Translated by AI
Versione italiana

Early diagnosis, evidence-based interventions, transition to adulthood and social and work inclusion. These are the 'bullet points' that emerge when we talk about autism, from its onset to its continuing to pose questions to clinicians, families and those who govern and manage health and social care, throughout the life course of the person who, with varying degrees of intensity, falls within the broad 'spectrum' redrawn by the latest diagnostic and statistical manual of mental disorders (Dsm-5).

Il paradosso Italia

For Italia, the good news is the ability to ascertain the presence of the disorder earlier than the average reported in the international literature: around three years as opposed to the 49 months needed in other countries. This is a very important element: early detection of signs of risk is a crucial step to initiate interventions capable of significantly affecting developmental trajectories and directing the diagnostic pathway. An efficiency that can be seen in the numbers, and in fact the estimated prevalence of this condition is one child in 77, with a higher incidence in males, for a total of about 500 thousand people. As Elisa Fazzi, president of the Society of Neuropsychiatry of Childhood and Adolescence (Sinpia), explained on the occasion of World Autism Awareness Day on 2 April, 'the increase in cases should not be interpreted solely as a real increase, but rather as the result of several factors, including the broadening of diagnostic criteria, greater awareness, and the improvement of screening and early diagnosis tools'. But it is Fazzi herself who presents the other side of the coin: 'This trend puts the system under pressure and makes it even more urgent to ensure adequate and timely responses throughout the country, providing services with the necessary resources'.

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The answers that are missing

The problem, therefore, is the response - both in terms of funding and the organisation of care provision - which to a large extent is still lacking and is extremely differentiated throughout the country: there are still great inequalities in territorial access, waiting times, and multidisciplinary care, also due to the lack of personnel and facilities, which Sinpia itself, as well as the patients' families' associations, have been highlighting for some time.

The structured offer of services is dramatically lacking, especially in some areas of Italia such as the South and the Islands, even though steps are being taken to implement it: the announcement of a new collaboration agreement between the Ministry of Health and the Higher Institute of Health, which will benefit from 10 million euros made available by the Autism Fund 2025-2026, has just been made. And which will be earmarked precisely to strengthen the autism network, to increase the number of early diagnoses, and to make people's life project more and more structured, in line with legislative decree 62 of 2024 implementing the disability reform, with the intention of maximising the full expression of people's potential. "All the Regions," warns Maria Luisa Scattoni, coordinator of the National Autism Observatory, "have been involved in the implementation of dedicated services and teams specialised in the management of behavioural emergencies, both in childhood and adulthood.
A need for which 67 professionals of the National Health Service have been trained - in the use of evidence-based techniques -: they will operate in public centres to guarantee dedicated interventions and disseminate specific skills. A breath of fresh air: the lack of specialised personnel is also one of the main critical issues in this field.

The Life Project

The life project is the bet that holds together the need to protect the transition to adulthood and the 'After Us'. the Regions are called upon to develop customised pathways based on the person's needs, preferences, and level of functioning," Scattoni continues. "The pathways will concern the areas of health, learning, work, and living in an integrated manner, and the activation of Autism Functional Units in the services of child neuropsychiatry and adult psychiatry is also envisaged, with the functions of evaluating, planning, and monitoring customised pathways.

Another strategic area - underlined by the Istituto Superiore di Sanità - concerns the improvement of reception and medical-hospital care paths for people on the autism spectrum and with intellectual disabilities. Based on the new national guidelines, the Autism Fund 2025-2026 envisages the activation of dedicated organisational models in hospitals, with specialised teams and digital monitoring tools.

From swimming pool to GPS to robot

From pool games to robots: while waiting for what has been designed to become reality throughout the country, the world of associations, the Third Sector and centres specialising in disability is in turmoil. Families - who needed answers 'as early as yesterday' - are receiving input and solutions in no particular order for the needs, including very practical ones, of each one.

Like that of having to subject one's child to an important but difficult clinical examination, such as the EEG. This is where the Serafico di Assisi comes to the rescue, which has invented a new desensitisation protocol for the ECG: children with autism are prepared through a one-week gradual course with the 'pool game', in which the headset with the electrodes is presented within a playful and reassuring framework, as if it were the headgear for entering the water. This experience is described in a paper published in the scientific journal Psychiatria Danubina and combines the construction of predictable routines and the involvement of caregivers. The results are remarkable: all the children involved in the protocol collaborated in the execution of the video-Ecg without engaging in dysfunctional behaviour, something that had previously been impossible due to opposition to the procedure.

Robotics also lends a hand: according to a study conducted by the Fondazione Don Gnocchi with the Politecnico di Milano and published in the Asian Journal of Psychiatry, children with autism spectrum disorder pay more attention to a 'social robot' - designed to interact with people through structured social signals such as gestures, postures, movements and direction of gaze, within communicative contexts - than to a human being. Specifically, the researchers analysed 'shared attention' - that is, the ability to share attention with another person towards something - in pre-school children diagnosed with autism spectrum disorder and in typically developing children, comparing interaction with a therapist and with a robot. In the former, it emerged that they pay more attention to stimuli from the robot, which then becomes 'a valuable ally of the therapist'.

The latest innovation presented stems from the need of a family, which has translated it into a support that can be applied throughout Italy as long as there is a collective mobilisation: it is called BluGo and is the first Italian application that allows people with autism spectrum disorder to move around independently and safely. Thanks to a network of certified volunteers, SPID, QR Code and real-time GPS, it coordinates the pick-up from the public transport stop to the destination, free of charge for the user. The app was presented in Magliano de' Marsi by its founder Stefano Fonzi, musician and father of an autistic boy, in the presence of the mayors of the municipalities that have joined the initiative. Because it will be precisely the municipalities that will make it possible to use it on their territory, through the involvement of local public transport companies. Once the app is downloaded, the journey is planned, indicating the time, starting point, final destination and any stops. When the person gets off the public transport, a certified volunteer - already alerted by the system and present within a radius of 5 km from the stop - picks them up via QR code and accompanies them on foot or by other means to their final destination. The identity of all parties involved is verified via SPID: the driver of the vehicle, the volunteer, the assisted person. The family is notified in real time at each handover. In case of emergency, an always-on SOS button on the assisted person's device notifies the guardian and can activate a direct call to 112.

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