When a person is grieving, knowing how to support them can be bewildering. Imagine then that that person is autistic and a close family member or a friend has died, a person who was part of their everyday life, part of their routines, how do you break that news? Support them in developing new routines? Coping with the rituals associated with grief and the inevitable changes and confusion they may feel? These are the central themes that Lipsky's book sets out to address.
Lipsky is a woman with high functioning autism and writes this book with insight into her own reactions to grief as well as those of people she has supported professionally. The book opens with Lipsky's explanation of how the book came about as a result of her own grief at losing a close friend; this precipitated a period of reflection on the differences in how people with autism grieve compared to those who do not have autism. She explains that the perceptions and expectations of both groups may “collide”, sometimes resulting in misunderstandings and assumptions on the part of non-autistic people that those with autism somehow do not care or are insensitive. Grieving, she suggests, is by no means non-existent for people with autism, it simply manifests differently.
There are six chapters to this slim and accessible book, the first five focusing on different aspects of grief. Chapter 1 sets out the “differences in dealing with problems” more generally, such as the autistic need to maintain order first and “feel” later. Chapter 2 covers “emotional expressions of grief” and how these may present or need to be responded to differently. Chapter 3 deals with “cultural expectations and autism” and the support people will need around understanding the unwritten rules and rituals of grieving and “knowing what to say”. Chapter 4 addresses the importance of how to communicate and the language used, emphasising how euphemisms surrounding death can be unhelpful and have consequences if taken literally. This leads into Chapter 5, which deals with “how to tell a person with autism someone died” and the utility of having a plan for this, for which a template plan is included. The sixth chapter deals with death as a special interest. In the case of some individuals who develop a curiosity around death, the neurotypical assumption is commonly that the individual is morbid and this may bring about concern in others. Lipsky rationalises this special interest as often stemming from an autistic approach to problem solving. This special interest may not last, but could be a process the person needs to go through to reach closure or to understand their own mortality.
This book, written from a first person perspective, allows the reader to gain a deeper empathy with how people with autism show and respond to grief. A key take-home point is that the person's initial response may be to consider how their routines will be affected; with the emotions and reactions coming later. Help can be provided if those around the person can start from a position of understanding that this reaction is not insensitivity, but a deep down instinct to maintain structure and order. Having supported someone with autism through bereavement, I would have found this book useful and informative as there are some useful strategies that can be adapted for specific individuals. Thinking about death, loss and grief can be distressing for anyone and is a topic we often avoid, yet advance discussions (especially when supporting someone on the spectrum) will ensure the right support is in place and is person centred.
