Intersection of Palliative Care in Autism Spectrum Disorder: A New Frontier?

– Dr Jyothsna Kuriakose, Vellore

Autism spectrum disorder (ASD) is a neurobiologic disorder with an early childhood onset which significantly impacts the functioning of individuals throughout their lives. The diagnostic criteria for ASD specified by DSM-5 captures symptoms pertaining to two major domains:

  1. persistent deficits in social communication and interaction such as deficits in social-emotional reciprocity, nonverbal communicative behaviours and understanding of social relationships
  2. restricted, repetitive patterns of behaviours such as stereotyped movements or speech, insistence on sameness, inflexibility, fixated interests and hyper- or hypoactivity to sensory input.

Co-existing intellectual disability is seen in about 40% of individuals with a diagnosis of ASD1. The estimated prevalence of ASD in Asia, Europe and North America is estimated at around 1%2. In India, it affects every 1 in 65 children in the age group  of 2 years to 9 years3.

In 2008, the United Nations General Assembly declared April 2nd as World Autism Awareness Day to highlight the efforts needed to improve the quality of life of individuals with ASD. The theme for World Autism Awareness Day 2023 is: “Transformation: towards a neuroinclusive world for all”. In this context, it is worthwhile to reflect on the challenges unique to this cohort and examine the scope for integration of palliative care services into the care of patients with ASD.

Supportive care services and interventions that are person centred and inclusive of the diversity of needs are crucial right from diagnosis, through to the end-of-life for patients with ASD. Difficulty in accessing equitable and appropriate health care, challenges in social communication, differing perspectives and thinking styles that affect their understanding of illness and expression of how they feel, definition of meaning and spirituality and struggling to place themselves in the narrative of their lives are some of the unique problems confronted by these patients. They often display abnormal responses to painful stimuli ranging from insensitivity to extremely noxious stimuli to intense sensitivity to idiosyncratic sources. If not promptly assessed, this may result in late diagnosis, inappropriate treatment and magnified distress. Use of appropriate assessment tools that focus on pain behaviours and paying attention to parent’s observations of symptoms could facilitate the capture of individualised expression of pain and other symptoms.

Health care professionals should also keep in mind that even a single hospital visit could mean a major stressor to patients with ASD in the form of an unfamiliar environment, long wait times, change in routine, increased sensory stimulation with bright lights, overcrowding, noise, fast paced environments and unwanted touch whilst getting vitals taken, during physical examination, investigations or procedures. Educating the staff, planning in advance, putting measures in place to guard against the sensory overload, effective communication and behavioural therapies could help alleviate this distress to a large extent.

The complexities of care get compounded during and after transition of these patients into adolescence and adulthood. Adolescents with ASD have difficulty engaging in group interactions and navigating relationships. Many adults with ASD are often socially isolated, lack gainful employment and have higher rates of anxiety and depression. Care coordinators are needed to guide families and their youth with ASD regarding the available educational opportunities, vocational training and to provide correct instructions regarding sexuality, relationships, safety and abuse prevention, finances, travel training, and self-advocacy. Moreover, most adults with ASD live with their parents or siblings in adulthood. Declining health and the death of the parents / siblings would negatively impact them. Tailored and proper communication strategies should be in place while dealing with such situations. As they live into adulthood, patients with ASD might develop various comorbidities and health care professionals need to be aware and sensitive to their challenges while treating them.

By providing an individualised and holistic care continuum, palliative care services can provide an additional layer of support to the existing healthcare facilities and personnel to bring about a sustainable and impactful difference in the quality of life of patients with ASD and their families throughout the illness. A few palliative care interventions in this regard as below:

  • Provisioning consistent support
  • Maintaining a strong partnership between health care teams and the patient’s social support systems
  • Delivering effective and personalised communication
  • Adopting proper symptom assessment and management
  • Implementing strategies to ensure that the individual is involved in decisions about his/her care
  • Supporting the patient to reflect on the important life events and experiences that have given meaning to their life
  • Initiating advance planning and communication to the multi-disciplinary health care team regarding reasonable accommodations or adjustments that might have to be made to ensure the best possible care for the patient
  • Provisioning support and respite to caregivers

However, to address this challenge, palliative care providers need to be equipped with the necessary knowledge and skills needed to care for individuals with ASD. This includes training on communication strategies, pain management, and to be able to recognise and address the unique needs of individuals with autism. It is worth exploring this uncharted territory through collaborative research at the national level so that the palliative care community can effectively contribute towards building a neuro-inclusive world for people in India with ASD.


  1. Nelson textbook of Pediatrics, 21st edition
  2. Salari N, Rasoulpoor S, Rasoulpoor S, et al. The global prevalence of autism spectrum disorder: a comprehensive systematic review and meta-analysis. Ital J Pediatr 48:112(2022).
  3. Dalwai, S., Ahmed, S., Udani, V. et al. Consensus statement of the Indian academy of pediatrics on evaluation and management of autism spectrum disorder. Indian Pediatr 54, 385–393 (2017).

About the Author:

Dr Jyothsna Kuriakose is an Assistant Professor, Department of Palliative Medicine, Christian Medical College, Vellore, Tamil Nadu. She completed her MD in Palliative Medicine in 2021.

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