Autism day, the loneliness of families aggravated by Covid: “The institutions are more sensitive. Vaccines? Delays and unacceptable disparities”

Autism day, the loneliness of families aggravated by Covid: “The institutions are more sensitive. Vaccines? Delays and unacceptable disparities”
Autism day, the loneliness of families aggravated by Covid: “The institutions are more sensitive. Vaccines? Delays and unacceptable disparities”
They have felt alone and abandoned for over a year with the ongoing Coronavirus pandemic, almost always living closed at home in extreme conditions at the limit of the bearable. This is the serious situation of families with an autistic person, which has worsened with the succession of various lockdowns. The closures, in particular, of schools (for minors) e Day centers (for adults) resulted in autistic people deprivations with heavy consequences for their fragile condition, thus losing the fruits of years of therapy. In this context, the World Autism Awareness Day which is celebrated on April 2nd. The Day was established in 2007 by the UN to draw everyone’s attention to the rights of people with autism. Families are exhausted and denounce the absence of basic public services to guarantee a dignified quality of life. The associations show that a National Register of Autistic Persons and the Autism Fund does not have the necessary resources to respond to needs.

“The number of requests for help has doubled in this period” – The Non-profit foundation Holy Family of Cesano Boscone (MI) has strengthened its team of specialists for a rapid take-over by the counseling service, also through remote connections and remote education activities. According to the Holy Family, “the lockdown and forced closure have changed routines and caused the loss of important points of reference, leading to the consolidation of new maladaptive habits. Adequate support allows younger children not to regress in previously acquired behaviors and skills and is essential in the 10-15 year old range, in order to prevent the use of maladaptive behaviors, including aggressive ones, in response to changes in habits and the lack of social relations “. Families have reached high levels of psychophysical suffering and also denounce the repeated absence of multidisciplinary care paths, especially for an autistic when he becomes an adult. “In Italy there are over 600 thousand people with autism, but the number is underestimated – say the associations – because many do not even receive a diagnosis and there is no national register ”. Worldwide, the incidence of autism is increasing, thanks to the growth of diagnoses, with a prevalence of about 1 new born in 100. In Italy, the autism spectrum syndrome, according to estimates by theNational Autism Observatory, affects 1 child in 77, with a ratio of 4 to 1 between males and females, and in total it is estimated that about 300 thousand live with the disease.

ANGSA: “Autistic people need to emerge from the indifference of institutions” – “Above all, we ask for massive public investments in basic scientific research that finally identifies the causes of autism”. To tell is the president of theNational Association of Autistic Parents (ANGSA) Giovanni Marino. “Autism cannot be cured, but it is possible to intervene with effective therapies and personalized projects”. According to ANGSA’s number one, there are several critical issues: “There is a lack of a vast national program of early diagnosis, ad hoc rehabilitation programs, specific access services to clinics, social and health professionals who know about autism and specialized day care centers”. Not to mention professional inclusion. “The world of work rejects them in 9 out of ten cases”. A disheartening reality. For Marino “that of autism it is a social issue that risks exploding if not approached carefully – he continues -. It takes a Marshall Plan for Autism. It is better for the whole of society to think carefully to prevent the situation from getting out of hand ”. For Marino, who has two severely autistic children living in the province of Reggio Calabria, autism is “a pathology accompanied by severe mental retardation and high behavioral deficits, as well as causing a condition of severe discomfort for the whole family. . Almost everything is missing for autism in Italy, there are some good experiences but the National Health System (NHS) should do much more. For example, the Law n.134 of 2015 indicates in the Essential Levels of Assistance (Lea) the taking charge of autistics too, but this is not achieved, at the regional level specific services are almost never provided “.

Also this year the ANGSA proposes an awareness campaign through social channels and with the various initiatives that will take place on the internet platforms. Furthermore, Rai 1 has made available an important opportunity for donations in favor of research. From 1 April, for 35 days, in the Amadeus program “I Soliti Ignoti – The return” the prize money won by the famous people, who are alternating in the various episodes, will be donated to the Italian Autism Foundation (FIA) for scientific research. Every evening there will be 250 thousand euros up for grabs, which, in the final game of the “mysterious relative”, will be able to double and reach 500 thousand euros.

The priority vaccines are good, but in the vaccination centers there are entrances designed to welcome autistic people accompanied by their caregivers “ – The administration of vaccines as soon as possible also to autistics and those who live with them. The associations ask for it and Elio, the singer of “Elio e le Storie Tese”, also reiterated it, launching an appeal to the Regions in this regard. “The management and organization of the vaccine plan for frail people sparked an initial serious panic, a bit like last year for tampons when they were scarce to figure out who was eligible first. We lived through weeks of uncertainty because autistics were initially excluded from the priority categories“. Only on 8 March did the Ministry of Health clarify and included autistics together with the over 80s and the disabled, as persons with serious disabilities certified art. 3 paragraph 3 of Law 104. For Marino it was a right choice, albeit belated and only following media protests. “The problem is that each region now applies the vaccination plan in its own way, creating unjustified and unacceptable disparities. The question of including caregivers – he adds – has not been specified well in the absence of a state law that indicates in a precise and uniform manner the figure of the caregiver ”. The ANGSA also highlights the fact that people with autism who are in the Health residences for the disabled (Rsd) of these Day Centers for the Disabled (Cdd) they are vaccinated, but those who live at home with their families are not yet. “We also find that there is no entry path to places predisposed to the administration of doses aimed at autistic people, who are forced to line up with all the others maybe for hours before being vaccinated, with the risk of creating moments of tension ”. This is subject to some positive exceptions, such as a Tor Vergata in Rome, where an ad hoc path has been set up. “We are aware – says Marino – that organizing a mass vaccination is a complex thing, but we ask the institutions to have more attention and sensitivity for these fragile people“. The president of ANGSA underlines that “in vaccination campaigns autistic people must be managed with a multidisciplinary team expert in behavioral techniques and ready to manage any problem and in places specially prepared to promote environmental adaptation”.

“My 20-year-old autistic son got Covid, it was very difficult” – “It all started in January with two operators and a patient of a Day center positive results, which led to the temporary closure of the facility. They advised us to have a swab and my autistic son also tested positive ”. This is what is reported to Rocco Pace, Matteo’s father with medium level autism. “He was sick only one evening with a fever, then he was locked up at home for another 3 weeks with the whole family. We went through some very difficult moments because he wanted to go out, but he couldn’t“. Of this story Rocco says that “the hardest thing for my son were the 4 swabs made with all the problems of the case for an autistic person”. Rocco underlines how the staff of the private day care center in Milan where his son returned to go once he became negative has always managed the emergency “with respect for anti-Covid protocols, with heart and great competence regarding patients. The operators were very empathetic, they always supported us with what could be done remotely, calling us every day, sending us work to be done, they were always there “. In mid-February Matteo returned to the Center where he feels calm because he is busy with other young people on multiple activities. They come to pick him up at home and take him back in a minibus. “What is it like to live in these situations? It was very hard go back to being closed in the house, you can see that Matteo is very nervous at times, we can never leave it alone and we are always afraid of a new possible crisis”.

“There is a lack of Affordable Autism Centers. Autistics after school are abandoned without multidisciplinary care paths “ – Rocco has many things to say and explains the various problems that families have to face: “The first thing we ask the institutions is to make it clear that these young people exist. Unfortunately we hear promises on the occasion of every April 2nd, but in reality our autistic children represent only uncomfortable numbers. Institutions must put a hand on their conscience and do something concrete, because we parents Do we always have to fight alone for every little thing?“. Then there is the age-old question of the lack of public services and adequate structures for them. “The cost of the day center where Matteo is very well is about 1,100 euros per month, but we ask to extend the municipal agreements in agreement with the Lombardy Region in order to have benefits. My son has a civil disability of 100%, art. 3 paragraph 3 with Law 104 and we have no benefits. The center that our son attends is one of the few excellent CDs for autism in the city and is the reason why I enrolled my son “, Rocco specifies,” we do not want to give it up also because the waiting times to access facilities specialized for autism can even reach over two years “.

Families who manage to find a place of excellence for their children do not rightly want to lose it. “With time we risk unleashing a race to get there first / pay more, when, on the other hand, the number of places available should be increased to give equal opportunities to all. People with autism are constantly growing but there are no services for them, ”says Rocco. Thanks to the commitment of his family above all, Matteo has consolidated autonomy, they made him do all kinds of therapies that sometimes need to be modified or updated. “All this has huge costs for our family and we have to cope on our own” says the father. “Vaccines speech? From the day center – he concludes – we have been informed that from April other structures with which they are in contact will begin to give vaccines to patients only, excluding family caregivers and their guardians ”.

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