Diana Gioria
The testimony of the mother of a 17 year old boy, sedated and tied to a chair because he was destabilized by crowding and noise. The neuropsychiatrist: completely inadequate reception in the facilities and unprepared staff
«Let’s start from the principle that an autistic person is a PERSON, and therefore, like everyone else, they can find themselves in the situation of having to access the emergency room for reasons independent of the autistic condition: of an organic or accidental nature (wounds, injuries, fractures). So it happens that one of my two autistic children, the one with very intensive support needs, gets a bad injury to his arm.
«In the emergency room they understand that it cannot be included in the triage mechanism only when my husband begins to suffer the complaints of my son who does not understand the release of that red liquid and enlarges the wound more, thinking of stopping it. It’s all screaming. Ingeniously they try to put stitches on him without sedation. The anesthetist arrives after various hemorrhages and escape attempts. But not even with sedation do they succeed unless they call together all the nurses on duty, and at best they stitch the wound.
«Before leaving you must wait at least half an hour for the effects of the sedation. They tie him up, yeah, they tie him to a chair, the padded blue ones. Ten minutes and he “scraps” an armrest. We sign against the doctors’ advice and go home with that piece of chair. It also happens that, on holiday, due to gastroenteritis you are forced to go to the emergency department, again with my son, just for an injection of an antiemetic. But the protocol requires blood tests, a Covid swab, and the presence of only one person. My insistence is of no avail. After having smashed half the emergency room and made two nurses fall and break a pair of glasses, they are convinced to at least let the assistants in and carry out the triage. Once the injection is done, we run away. After a few months, the bill to pay for the white code arrives at the assistants.”
The testimony is from the mother of two boys, brother (17 years old) and sister (21 years old), on the autistic spectrum; Unfortunately, her story is not an isolated case, but in most cases, for people with autism, going to the emergency room is a traumatic experience. The ones who have the most problems are children and young people who, due to the pathology itself, are hospitalized urgently due to anxiety and mood disorders.
More difficult access
Luigi Mazzone, child neuropsychiatrist at the Tor Vergata University of Rome, found that the most frequent and most difficult to manage attacks occur especially in summer, when in daily life, children lose the tranquility given by the routine of alternating school and home, and they remain at the mercy of many downtimes triggering serious psychological situations which often require the use of the emergency room.
Unprepared doctors and nurses
The long waits and the stay in the DEA (Emergency and Reception Department), very crowded and noisy environments, are destabilizing factors that amplify maladaptive behaviors, and make visits even more difficult. Furthermore, the lack of specific training on the part of doctors and nurses in knowing how to communicate and manage patients with autism increases the factor of stress and of great discomfort to the patients themselves.
«I consider reception in the DEA to be one of the healthcare priorities for autistic people – declares Mazzone – The starting point concerns the environmental context and subsequently the approach of the healthcare personnel. Sensory overload, which is often present in the emergency room, is in many cases a further cause that weakens or exacerbates states of anxiety or psychomotor agitation.”
The legal problem
The real problem is upstream: at a legal – legislative level there is no type of protocol that protects and regulates the access and stay of patients with autism within emergency rooms. Not even the latest provision, enabling law 227 of 2021, “Delegation to the Government on disability” does not clearly reiterate the right to health of people on the autism spectrum, like people with other disabilities.
The situation is quite critical, considering the fact that in Italy the population with autism represents approximately 1.5% of the total population, this means that every week, or at most every month, there is a great possibility that there is at least one access of people with autism.
Simple which strategies to adopt
To deal with this complexity, experts, including Mazzone himself, all agree that it is sufficient to adopt simple strategies.
Within the DEA it is necessary to create spaces specifically suitable for patients with this disorder, that is, places with little noise, not very crowded, free from any type of danger and equipped with specific material to deceive waiting times, where patients can stay calm down. Furthermore, particular attention must be given to the training of the medical team, thanks to which doctors and their teams have adequate professional preparation, to be able to manage the peculiarities of patients with autism, such as their dysfunctional behaviors.
Get in tune with the patient
«It is essential to know how to use the right strategies to get in tune with the autistic patient – continues Mazzone – in terms of communication which must be as clear and direct as possible, codifying and also considering all the non-verbal behaviors and emotional difficulties that an autistic person can not being able to express and, vice versa, the healthcare worker can transmit through his expressions, emotions and body language. You must always know how to listen and always take the patient’s emotions seriously, avoiding a rigid attitude and technicalities or symmetrical responses to any provocations. Finally, I think it is important to convey safety, understanding and welcome to the family to initiate the best possible care and therapeutic path, even in the emergency room.”
The “reception room” at the PS in Udine
Among the various initiatives that have been carried out over time in various parts of Italy, there is the recent creation of the “reception room” at the emergency room in Udine. The room was conceived as an environment dedicated to comfort and emotional welcome, a small quiet lounge away from the confusion, the many noises and the loud shouting of the runners; where those who need it, such as patients with autism, can find a moment of reflection, reunion and communication of their state of mind, without all the noise around.
The room is located near the reception area, but is reserved for the main flows of the emergency room.
The furnishings
The furnishings were chosen with the help of experts to create a “warm” and humanized environment, very different from the usual hospital context. The lights are of variable intensity, the walls painted in soft colors and the floor has a semi-wooden finish. To make the room very similar to a home environment, it has been furnished with a sofa, armchairs, plants and paintings.
Staff
The “reception room” is coordinated by qualified staff trained to manage patients with autism, who take care of them from the moment of admission. The medical staff itself, in addition to providing the necessary care, acts in such a way as to make the experience in the emergency room as less traumatic as possible, managing both the waiting times and the stay in the emergency room as best as possible.
A cultural choice
«The “reception room” is first of all a cultural choice that the Friuli Centrale University Health Authority has been able to make, creating a project that benefits people with disabilities, with autism and looks at all those situations that they need a comfortable, reserved and non-medicalized environment for communication – declared Riccardo Ricciardi, regional health councilor – a choice that I hope can also positively influence the work of professionals, in particular those who operate in emergencies in emergency areas that they must be put in a position to work in the best possible way in order to provide the most appropriate responses to people’s health needs.”
The healthcare company now aims to create the “reception room” also in the spoke hospitals, i.e. the local hospital units.
March 8, 2024
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