Caring for Adults with Autism. A Nursing Lived Experience

Background: Research data on the interaction of nursing staff with autistic patients based on qualitative design are limited. The degree of difficulty in handling such individuals is reflected in the case report of an autistic patient, here named “Lena”, in a relevant study derived from the “Psyhargo B” programme. Aim: Analysis of the narratives of the lived experience of a nurse who applied the “participant observation” method in order to detect: (a) The feelings of nursing staff caring for autistic patients, and (b) problems that such individuals confront on leaving the asylum and going into homes. Method: In this qualitative research project, the “participant observation” technique was used by a nurse in the psychiatric home where a 35 year-old autistic patient lived. Content analysis was made on the nursing notes where she described her thoughts and made reports as she was trying to care for the patient and to observe and comprehend the autistic subject’s reactions and non verbal communication attempts. The nurse also reported her own feelings about this “unique” interaction. Results: Both nurse and patient experienced fear, anger and anxiety, which made communication and the accomplishment of the desired tasks difficult. The basic concerns of the nursing staff identified by the analysis were, mainly, how to deal with autism and the uniqueness of this condition, the difficulty in setting goals, implementation of an individualized care plan, the need for correct and humane handling of autistic people, the sense of pointlessness that often engulfs the nursing staff and their feelings of fatigue and professional limitations. Conclusions: Autistic people experience feelings of anxiety and defeat and they often become withdrawn within themselves in a silence which “screams” for help. The role of the nursing staff, thus, is crucial. Adequate education, training and specialization are needed in order for nurses to successfully anticipate the care needs of autistic patients.