Autistic individuals represent nearly 1% of the French population, meaning that every nurse, regardless of their area of practice, will be required to care for patients with ASD during their career. However, the sensory, communicative, and behavioral characteristics of autism require specific adaptations to ensure quality care that respects the patient. This article presents essential knowledge and recommended training for nurses wishing to develop their expertise in the nursing support of autistic individuals.

Understanding the Specific Challenges of Caring for Autistic Individuals

The medical environment concentrates many stress factors for autistic individuals: bright lights, equipment noises, product smells, unpredictable waiting times, physical contact with strangers, changes in routine. These elements, innocuous for most patients, can generate intense distress in an individual with ASD and compromise the delivery of care.

Communication difficulties amplify this challenge. Some autistic individuals have limited or absent language, while others express themselves verbally but struggle to describe their symptoms or feelings. A literal understanding of language can lead to misunderstandings regarding instructions or medical explanations.

Sensorial Particularities to Consider

The majority of autistic individuals exhibit sensory processing differences that directly impact their care experience. Tactile hypersensitivity can make even a simple touch or wearing an identification bracelet painful. Auditory hypersensitivity transforms the sound of a monitor into unbearable auditory aggression.

Conversely, some individuals exhibit hyposensitivity to pain, which can delay the detection of medical issues or lead to an underestimation of their suffering. This variability necessitates an individualized assessment of each autistic patient's sensory reactions.

Communication Difficulties with the Patient

Communication poses a major challenge in caring for autistic individuals. Gathering symptoms can be complex when the patient does not verbalize their pain or describes their sensations in unusual ways. Open-ended questions (“Where does it hurt?”) may be more difficult to process than closed or multiple-choice questions.

Understanding instructions also requires adaptations. Figurative expressions, implicit language, or multiple instructions can generate confusion. An autistic individual may take a command like “Don’t move” literally and remain frozen far longer than necessary.

Essential Adaptations in Nursing Practice

Training nurses on the specificities of autism allows for the implementation of simple yet effective adaptations that significantly improve the quality of care and the patient experience. These adaptations concern the environment, communication, preparation for care, and collaboration with relatives.

Adapting the Care Environment

Modifying the environment is the first step to facilitating care. Reducing harmful sensory stimuli (brightness, noise, odors) creates a more favorable context for patient cooperation. Offering an individual room rather than a shared waiting area limits exposure to unpredictable stimuli.

Effectively Communicating with the Autistic Patient

Adapting communication is a key skill for nurses working with autistic patients. Using clear, concrete, and literal language avoids misunderstandings. Breaking down instructions into simple steps facilitates understanding and execution.

Visual supports are valuable tools: images illustrating the steps of a procedure, pictograms indicating locations, visual scales for assessing pain. These supports compensate for verbal comprehension difficulties and allow the patient to better anticipate what will happen.

Preparing the Patient for Care

Preparing the patient in advance of care significantly reduces anxiety and improves cooperation. Clearly explaining what will happen, in what order, and how long it will take allows the patient to anticipate and mentally prepare.

Using social stories, developed in collaboration with the educational team or relatives, is an effective strategy. These illustrated stories describe the care process step by step and help the patient understand what is expected of them.

Collaborating with Relatives and Supporting Professionals

Families and professionals who know the patient well are valuable resources for adapting care. They can inform the care team about the individual's particularities, stress factors, calming strategies, and communication styles.

Facilitating the presence of a companion throughout the care process reassures the patient and facilitates communication. This companion can help interpret the patient's reactions and convey essential information to the care team.

Managing Pain in Autistic Patients

Assessing and managing pain presents particularities in autistic individuals. Difficulties in verbalizing pain, atypical reactions, and sensory differences complicate the nurse's work and require heightened vigilance.

Atypical Expressions of Pain

An autistic individual may express pain in unusual ways: social withdrawal, increased repetitive behaviors, changes in sleep or eating patterns, aggression or self-injury. These indirect signs should alert the care team to possible physical suffering.

Conversely, the absence of complaints or visible manifestations does not mean the absence of pain. Some autistic individuals exhibit diminished pain expression, which can lead to underassessment and insufficient treatment.

Adapted Assessment Tools

Standard self-assessment pain scales can be difficult for autistic individuals to use. Visual analog scales, face scales, or numerical scales require abstraction and communication skills that are not always present.

Specific tools have been developed for individuals with communication difficulties, such as the FLACC scale for children or the GED-DI scale for adults with intellectual disabilities. These observation-based tools allow for a more reliable assessment of pain.

Training on the Specificities of Autism: Recommended Pathways

Continuing education allows nurses to develop the necessary skills for the nursing support of autistic individuals. Several types of training meet different needs, from basic awareness to in-depth expertise.

Awareness Training

Short awareness training sessions on autism represent an accessible first step for all caregivers. Lasting one to two days, they allow participants to acquire basic knowledge about the disorder, understand the difficulties faced by autistic patients, and discover essential adaptations.

These trainings are often offered by healthcare institutions as part of continuing education plans. They can also be provided by autism resource centers, specialized associations, or professional training organizations.

In-Depth Training

For nurses regularly working with autistic patients (child psychiatry, medical-social establishments, specialized services), more in-depth training allows for the development of true expertise. University diplomas in autism offer comprehensive teachings on diagnosis, interventions, and support.

Specific training on crisis management, alternative communication, or behavioral disorders provides targeted skills particularly useful in care contexts.

DYNSEO Training: Supporting a Child with Autism

A comprehensive training to understand autism and adapt your daily support. Applicable in care contexts to improve relationships with patients with ASD.

Access the training

Learning Through Experience

Beyond formal training, learning through experience plays an essential role. Support from experienced colleagues, exchanges with educational teams from medical-social establishments, and feedback from families continuously enrich skills.

Participating in practice analysis groups or supervision sessions allows for addressing complex situations encountered and developing adapted strategies. These collective reflection spaces are valuable for progressing in the support of autistic patients.

Support Tools for Nursing Care

Various tools facilitate the adaptation of care for autistic individuals. Knowing and knowing how to use them is part of the skills to be developed by trained nurses.

Visual Supports and Social Stories

Pictograms, photographic sequences, and social stories are valuable tools for preparing and supporting care. They allow the patient to visualize what will happen and better understand what is expected of them.

Standardized resources exist for common care situations (blood draws, medical consultations, surgical interventions). Nurses can also create personalized supports in collaboration with families and educational teams.

Digital Support Tools

Digital applications offer new possibilities to facilitate communication and waiting during care. Some applications allow for the creation of personalized visual supports, while others offer calming activities to occupy the patient during waiting times.

The COCO PENSE and COCO BOUGE program, developed by DYNSEO for children aged 5 to 10, can be used as a distraction and calming tool during waiting times in emergencies or hospitalizations. Cognitive games capture the child's attention and reduce their anxiety.

COCO PENSE and COCO BOUGE: A Tool to Facilitate Waiting and Care

Educational games designed for autistic children, usable as a distraction and calming tool during waiting times or care. Three levels of difficulty to adapt to each child.

Discover COCO

Health Passports and Liaison Sheets

Health passports or liaison sheets are synthetic documents that gather essential information about the patient: their communication style, stress factors, calming strategies, sensory particularities, and treatments. These documents facilitate the transmission of information during emergency visits or hospitalizations.

Encouraging families to create and keep this type of document updated improves the quality of care during each contact with the healthcare system.

Testimonials from Nurses Trained in Autism

Supporting Crisis Situations

Crisis situations (agitation, aggression, self-injury) can arise during care, particularly when the patient is confronted with sensory overload, misunderstanding, or poorly managed pain. The trained nurse knows how to recognize early signs and intervene appropriately.

Recognizing Early Signs

Before a crisis, most autistic individuals exhibit warning signs: increased motor agitation, intensification of stereotypies, changes in gaze or facial expression, attempts to flee. Identifying these signs early allows for intervention before escalation.

Calming Strategies

In the face of rising stress, several strategies can help avoid a crisis: reducing sensory stimuli, proposing a break in a calm place, using calming objects or activities, offering reassuring listening without forcing contact.

Knowledge of the patient and their preferences is valuable in these moments. Information provided by relatives or recorded in the health passport guides the intervention.

Intervention in Crisis Situations

When a crisis occurs despite preventive measures, the goal is to ensure everyone's safety while minimizing restraint. A calm environment, a reassuring attitude, a steady tone of voice, and the absence of threats promote a return to calm.

Post-crisis analysis with the team allows for identifying triggers and implementing preventive measures for future care. This continuous improvement approach is essential.