by Maria Giovanna Faiella
In Italy, one child in 77, between 7 and 9 years old, has an autism spectrum disorder. 500 thousand families involved. Cognitive-behavioral therapies (recommended by Guidelines) are most often paid for by families. Experts at work (Ministerial Decree) for the Consensus Conference on ABA-based interventions
Difficulty in communicating (verbal and otherwise) and interacting with others, for example a “lost” look, tendency to isolate, little interest in other children; stereotyped and repetitive behaviors such as constant rocking or clapping or repetitive speaking); in some cases there may be an alteration of motor coordination (for example an extravagant, awkward gait or other anomalous signs), in others there may be an intellectual impairment.
These are some of the manifestations of autism spectrum disorders, which can manifest themselves in different forms and severity.
April 2nd is World Autism Awareness Day, established in 2007 by the United Nations to shine a spotlight on this condition (it is not a disease) which in our country is estimated to affect one in 77 children between the ages of 7 and 9. , and around 500 thousand families.
Autism spectrum disorders: what they are, how to recognize them
Not all forms of autism are the same, which is why we talk about “autism spectrum disorders”, a heterogeneous group of conditions characterized mainly by:
– impairment in the areas of communication and social interaction,
– repetitive and stereotyped patterns of behavior, interests and activities.
The symptoms can be extremely heterogeneous both in terms of complexity and severity and, furthermore, vary over time, as well as manifest themselves differently from person to person.
The most common symptoms are:
• difficulty in verbal communication with repetitive language or language not useful for communication or completely absent;
• difficulties in non-verbal communication, for example having difficulty looking into the eyes of those in front of you and maintaining eye contact, not having facial expressiveness or feeling indifference towards the facial expressions of parents and other people;
• relational difficulties with little (or no) ability to share interests, emotions or feelings and to interact with others, both peers and adults;
• stereotyped behaviours, with gestures that are always the same and repeated, such as rocking, clapping, snapping one’s fingers;
• narrow interests, such as a pathological attachment to particular objects;
• abnormal reactions to sensory or environmental stimuli (for example: sudden sounds, flashes of light).
Diagnosis, who to contact
The causes of autism spectrum disorders are not fully known. The diagnosis can only be made through observation of behavior.
Elisa Fazzi, president of the Italian Society of Child and Adolescent Neuropsychiatry (SINPIA) and director of Child and Adolescent Neuropsychiatry at the ASST Spedali Civili and University of Brescia, explains: «The identification of signs of risk, early diagnosis and timely intervention are strategic actions for improving the prognosis and quality of life of children with autism spectrum disorders and their caregivers. It is important that child and adolescent neuropsychiatry services throughout the national territory have at their disposal all the resources necessary to carry out early intervention, a request that we have been insistently formulating for years and which is still not a reality today. consolidated”.
The Istituto Superiore di Sanità, on mandate from the Ministry of Health, has activated a permanent collaboration with all the Regions and autonomous Provinces for the mapping of regional and provincial services for the diagnosis and care of people with autism spectrum disorders and others neurodevelopmental disorders, at all ages of life. On the website ofNational Autism Observatory you can find the services of accredited/affiliated public and private facilities available in the area.
Reports from schools
On the occasion of the world day, some child neuropsychiatrists, pedagogists and philosophers, who have signed the Autism Manifesto, warn against “diagnostic excesses” to protect children from possible errors and confusion. In particular, the authors of the Manifesto underline: «Every child who presents developmental difficulties, which could be transitory if addressed with appropriate interventions on the child himself and his family context, is immediately reported by the schools, perhaps too involved in these practices, as suspicion of autism and the family invited, sometimes with strong pressure, to contact specialized centers to start the necessary treatments. Treatments that do not always take into consideration the emotional-relational world of the child and his truest and deepest needs.”
Therapeutic interventions and life plans
Following the diagnosis of autism spectrum disorder, there are various therapeutic interventions proposed and they must be calibrated to the specific needs of the person in the various stages of life. Among the most effective ones, according to Guide recommendations on the diagnosis and treatment of autism spectrum disorder in children and adolescentspublished by the Istituto Superiore di Sanità in October 2023, there are cognitive-behavioral therapies, most of the time, however, paid for by families.
Furthermore, “tailor-made” individual life projects aimed at the employment of adults with autism spectrum disorders which enhance their abilities are also fundamental, but often still a mirage, as established by the same Add n. 134/2015«Provisions regarding the diagnosis, treatment and qualification of people with autism spectrum disorders and assistance to families».
Ministry of Health, experts at work
Last February 20th, the Ministry of Health, with the Decree of the Undersecretary Marcello Gemmato, commissioned a group of experts in the field of autism spectrum disorders to define more fully, within three months (May 20th ed.), «certain aspects relating to habilitative/rehabilitative therapeutic treatments, based on the principles of the science of behavior analysis, applied within the National Health Service, for children with autism spectrum disorders aged between 0 and 7 years and, in particular, guaranteeing the appropriate management of specific and controversial clinical situations”.
Specifically, the working group has the task of defining, through a consensus conference:
– whether the personalized behavioral intervention (intensive/focused), based on the «ABA» principles (acronym for «Applied behavior analysis»), is appropriate in the age range from zero to seven years, within an overall therapeutic project;
– what is the minimum duration of hours for the comprehensive intervention based on ABA principles depending on the severity of the autism spectrum disorder diagnosed in the 0-7 year age group.
More prejudices
«Unfortunately – says Roberto Speziale, president of Anfass-National Association of families and people with intellectual disabilities and neurodevelopmental disorders, which takes care of around 4,000 people on the autism spectrum and their families throughout Italy – even today we are forced to point out the constant presence of stereotypes and preconceptions that continue to cause discrimination: there are still many cultural legacies to counter and debunk, starting with the correct use of words and language when talking about spectrum disorders, to avoid derogatory and denigrating terms. Another important issue is taking charge: it is about having adequate assistance from the diagnosis and throughout their life, and not random interventions. From this perspective, support for families is also very important: they must not be left alone to make up for the shortcomings of a system that should instead be working. Another sore point is the lack of resources and funds, a serious problem that has gone unanswered for too long.”
Initiatives and monuments that are tinged with blue
On the occasion of World Day, the #sfidAutismo24 awareness and fundraising campaign promoted by the Italian Foundation for Autism (FIA) to finance research projects aimed at both identifying autism spectrum disorders early and promoting interventions based on scientific evidence.
Among the initiatives scheduled for 2 April: the scientific conference «Life project in autism, from sport to work inclusion», in Rome at the CONI headquarters, organized by Aira-Italian Association for Autism Research in collaboration with the Child Neuropsychiatry Department of the University of Tor Vergata and the Bambino Gesù Hospital. Also at Coni, during the charity-gala evening, a scientific and informative story on autism will be presented, as well as an exhibition of works created by young people followed by the Neuropsychiatry operational unit of the Tor Vergata Polyclinic and a fencing challenge will be held between two teams made up of Italian Olympians and athletes with autism.
After sunset, the main Italian monuments will light up in blue – the symbolic color of autism – to shine a spotlight on this condition.
On 17 April in Milan, at the Neuropsychiatry and Developmental Rehabilitation Unit of the IRCCS “Don Gnocchi”, a “technologically assisted room” will be inaugurated for the observation of children during play, created thanks to the support of the Zorzi Association for Neurosciences: will allow the activities of young patients to be monitored (and studied) – even externally and remotely – in order to improve rehabilitation interventions.
April 2, 2024
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