Autism Speaks. Grief and bereavement resources for people with autism. 2021. (accessed 20 February 2022)

Autism West Midlands. Autism and bereavement: a guide for parents and carers. 2020. (accessed 20 February 2022)

Barber C Autism and Asperger's conditions: a practical guide for nurses.London: Quay Books; 2011

How to support individuals on the autism spectrum through grief and loss. 2021. (accessed 03 June 2022)

Letter to parents of babies born with Down syndrome. (accessed 11 March 2022)

Recurrent grief in mothering a child with an intellectual disability to adulthood: grieving is the healing. 2016.

Bupa. Talking about men's mental health. 2022. (accessed 07 March 2022)

Cheshire and Wirral Partnership NHS Trust. Bereavement and learning disabilities: a guide for carers. 2018. (accessed 03 June 2022)

Coad J, Hardicre J, Devitt P How to search for and use ‘grey literature’ in research. Nursing times. 2006; 102:(50)35-6

Cruse. Anticipatory grief. 2021a. (accessed 10 March 2022)

Cruse. The long goodbye. 2021b. (accessed 11 March 2022)

Anticipatory grief: when someone you love is seriously ill. 2017. (accessed 12 February 2022)

Grief, bereavement and loss. 2021. (accessed 11 June 2022)

Autistic grief is not like neurotypical grief. 2012. (accessed 12 June 2022)

Gaventa W Spirituality issues and strategies: crisis and opportunity.Washington, DC: American Association on Intellectual and Developmental Disabilities; 2010

Bereavement and autism: a universal experience with unique challenges. 2019. (accessed 20 February 2022)

The impact of anticipatory grief on caregiver burden in dementia caregivers. 2009.

What to do when someone receives a terminal diagnosis. 2022. (accessed 07 July 2022)

Kubler-Ross E, Kessler D On grief and grieving: finding the meaning of grief.London: Simon & Schuster; 2014

Dead funny: what comedy brings to the experience of grief. 2016. (accessed 11 March 2022)

Mental Health Foundation. Men and mental health. 2022. (accessed 08 March 2022)

Mind. It's ok to ask for help. 2022. (accessed 08 March 2022)

National Autistic Society. Bereavement: a guide for autistic adults. 2022. (accessed 20 February 2022)

National Bereavement Alliance. Bereavement research gaps and priorities in the UK: project findings for discussion. 2020. (accessed 05 March 2022)

Parkes C, Prigerson H Bereavement: studies of grief in adult life, 4th edn. London: Penguin; 2010

Purkis Y The autism and neurodiversity self advocacy handbook: developing the skills to determine your own future.London: Jessica Kingsley Publishers; 2022

Anticipatory grief: recognition and coping. 2008.

What is anticipatory grief?. 2020. (accessed 12 February 2022)

Thorp N, Stedmon J, Lloyd H “I carry her in my heart”: an exploration of the experience of bereavement for people with learning disability. British Journal of Learning Disabilities. 2018; 46:(1)45-53

UK Government. Ethnographic study: qualitative studies. 2020. (accessed 28 May 2022)

Autism and right and wrong. 2021. (accessed 11 March 2022)

Wing L The autism spectrum, 2nd edn. London: Robinson; 2012

Winter P Loud hands and loud voices.Washington: The Autistic Press; 2012

Yoshida Y How to be yourself in a world that's different.London: Jessica Kingsley Publishers; 2008

Anticipatory grief and bereavement: the perspective of an individual with autism

02 August 2022
19 min read
Volume 27 · Issue 8


Much has been written around the meaning and impact of grief and grieving on people's lives following the death of a person, and anticipatory grief/grieving is receiving increased attention in nursing and healthcare. However, the impact of anticipatory grief on an autistic male adult has received far less research exposure than that of neurotypical (non-autistic) adults. This article, ‘written’ in the form of a letter by the author to community nurses, seeks to address this. The intention is to initiate reflective discussions around anticipatory grief and grieving, as current and future support will be stimulated on the part of community nurses through dialogue between those on the autistic spectrum and community nurses. Ultimately, the aim of this article is to help improve the support provided by community nurses to autistic individuals.

Bereavement, in all its manifestations and lived experiences, has been the focus of several published research, clinical works and interventions. However, it could also be suggested that there are significant gaps in knowledge around specific issues and population groups (Thorp et al, 2018; National Bereavement Alliance, 2020). Such gaps in knowledge could have a detrimental effect on both the delivery and perception of the support services of these population groups. Bereavement and its effects on men, and its effects on those who have an autism spectrum condition or who identify themselves as autistic, are of special interest to the author of this article. The author is an autistic male in his early 60s, whose wife died of multiple and long-standing health and disability issues in January 2021 after nearly 30 years of marriage. This article hopes to initiate a reflective debate around anticipatory grief (AG) and grieving, as well as the current and future support provided by community nurses for autistic adults who are journeying through these experiences. The intention of this article is to help improve the support provided by community nurses to autistic individuals.

Register now to continue reading

Thank you for visiting Community Nursing and reading some of our peer-reviewed resources for district and community nurses. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to clinical or professional articles

  • New content and clinical newsletter updates each month