Nursing Imperatives in Autism Spectrum Disorder

Abstract

Autism or autism spectrum disorder (ASD) overarches neurodevelopmental disability among children that entails developmental delays attributed in three major domains i.e., impairment of social interactions, ineffective verbal and non-verbal communication skills and repetitive sensory and motor behavior. Symptomology appears at 18 to 24 months of age and stays till last breath. ASD is five times more prevalent in male as compared to female (5:1).¹ Globally, one in 160 children affected with ASD and disability adjusted lives (DAL) accounted for 7.6 million or higher.  According to Center of Disease Control (CDC) report, in past few decades, the prevalence showed drastic trends on an alarming level in the middle eastern countries and Europe ranging from 1.4 to 29 per 10,000 population and showed 4 to 17 per 1,000 respectively. This is unfortunately 600% increase in prevalence of ASD.² ASD counted for increased inflation in burden of disease among south Asian countries including Pakistan. ASD is a life-long condition and to date with there is no cure available. Due to its chronic nature, ASD places a tremendous burden on the parents in terms of direct and indirect cost of medical and mundane activities. According to Pakistan Autism Society (PAS), there is no reliable data available regarding prevalence of disease due to lack of research body, and improper access of people from slums to complex and expensive diagnostic and therapeutic interventions available in very few public institutions of Pakistan.³ However, these statistics are not very different compared to other south Asian countries.  Moreover, existing literature illuminated that knowledge, awareness and understandings about ASD is quite deficient among healthcare professionals, including doctors, nurses and allied health professionals.

Children with autism exhibit peculiar attributes such as language or speech impairment, learning debilities and sensory perception towards physical or hospital environment and visitors. It inculcates a nurse’ imperative to deliver person- centered nursing care of ASD child in attaining the Gordon’s functional health pattern exclusively, the risk of delayed development, risk for injury and impaired social interaction to achieve the positive outcomes.^4,5 Key guidelines for nurses to care for autism spectrum disorder include a holistic care of an inpatient client with autism; i) knowledge and understanding of ASD, ii) encouragement of family involvements, iii) effective communication skill, iv) change dynamic challenge, v) commitment in delivering  nursing care, vi) ensure safe environment, vii) identify emotional challenges and reward system, viii) multidisciplinary team involvement, ix) support and counselling therapies for family and, x) documentation and record keeping of all developmental parameters of autistic child.⁶    

In Pakistan, there is a need to train specialized nurses to deal Autism Spectrum Disorder (ASD) and children with other leaning disabilities. While there is still much progress to be made, efforts are done to improve understanding, support, and provision of services to individuals with autism and learning disabilities in the country. The scope of learning disability nursing involves providing specialized care and support to individuals with learning disabilities. Learning disabilities can affect a person’s ability to learn, communicate, and function in daily life. Learning disability nurses work in various settings, such as hospitals, clinics, schools, and community centers.⁷ Nurses play a crucial role in assessing, planning, and implementing care plans for individuals with learning disabilities. They provide support and guidance to patients and their families, assisting them in managing their conditions effectively. Learning disability nurses also collaborate with other healthcare professionals, educators, and social workers to ensure holistic care of their patients. To address the unmet needs of children with developmental delays or autism spectrum disorder, a nurse can play the role of educator, advocator and change agent. Nurse practitioner helps in timely diagnosis and referrals to medical intervention which can ultimately reduce the behavioral severity and improved quality of life of an ASD child. It is greatly emphasized on the nursing imperatives for identification and recognition of concerns of child and families in any intervention program in achieving desirable outcomes of child with ASD.