Autism and Grief
By Jessica Leyton
Grief is a universal experience for us all and can come in many forms. Most of us know grief to be associated with the loss of a loved one or pet, however we can also experience loss without death being a factor.
Some examples of non-death loss include:
Loss of functioning due to burnout or other chronic health issues
Receiving a new diagnosis
School transitions (e.g. moving from high school to workforce or tertiary education)
Relationship breakups or divorce
Having children or changes in parenting roles
What do we know about grief?
Some past theories of grief suggest that grieving takes place in ‘stages’, and that everyone’s experience of grief follows a similar path. These theories have resulted in myths emerging around there being a ‘right’ way to grieve. We know that grief can look different for everyone, and it is “non-linear”, meaning it does not progress in one direction. Grief can fluctuate and does not necessarily “go away” over time. Dr Lois Tonkin talks about grief as being something that we ‘grow around’. Her “Growing Around Grief” model is shown below:
How might Autistic folk experience grief differently?
It is not uncommon to hear that Autistic folk are often criticised or judged for their responses to loss. It is important to reflect on which neuronormative expectations may be present around death, grieving and loss. Spicer and Mitchelson (2024) suggested the following examples of neuronormative expectations we might hold:
Avoiding direct use of language around death and dying
E.g. use of statements such as “they passed away”, “they are no longer with us”, or “they crossed the rainbow bridge”
Needing to be around family following a loss
Various rules and conventions associated with funerals or memorials
Expectations to comfort others and engage in conversations around others’ experiences of loss
Others’ judgements of what is considered ‘worthy’ of grief
Expectations around time needed to return to daily functioning (however this looks)
Autistic grief processes may look very different to neuronormative expectations of grief. For example, Autistic folks may experience grief after the loss of a special interest, major life transitions, or losing a loved anime/TV character.
Grief responses can look very different for Autistic folk and can impact several aspects of daily life. A qualitative study conducted in 2023 explored Autistic adults’ experiences of grief, and found the following responses were commonly reported:
Changes in sensory processing
Increased masking
Routine changes
Increases in meltdowns/shutdowns
Social Isolation
Increased difficulties with executive functioning
How can you support your Autistic friends and loved ones through their grief?
Here are some tips that can help you navigate supporting Autistic folk who may be grieving:
Validate their grief
Grieving is a normal human experience however may look and feel more (or less) intense for Autistic folk
Be aware of your own beliefs around what is ‘worthy’ of grieving
Avoid ‘silver linings’ and inserting your own beliefs
e.g “it all happens for a reason” or “they’re in a better place now”
Encourage social support when the person is ready
This does not need to be in person or lengthy social catch ups
Online connections are also a good way to reach out for support
Encourage sensory regulation and stimming
Take an interest in the person’s SPINs and help them engage with these
Explore different ways to communicate
Consider non-speaking forms of communication including texting or writing notes to each other
Encourage continued participation in routine and preferred activities
Utilise Neurodivergent Love Languages that are relevant to your loved one when trying to connect with them. These can include:
Info-Dumping
Parallel Play
Penguin Pebbling
Deep Pressure
Support Swapping
If you or a loved one is needing support with their grief, there is no shame in reaching out for help. Here are some places that can assist:
REFERENCES:
Friend, L. (2020, March 5). Grief is not something we "get over", however in time our life can grow around grief. L Friend Counselling. https://www.louisefriendcounselling.com/post/grief-is-not-something-we-get-over-however-in-time-our-life-can-grow-around-grief
Marschall, A. (2024, July 29). What are the 5 neurodivergent love languages? Verywell Mind. Retrieved August 23, 2024, from https://www.verywellmind.com/the-5-neurodivergent-love-languages-8682618
Mitchelson, M., & Spicer, L. (2024, February). Neurodivergence and Grief: Supporting Autistic and ADHD clients in navigating loss.
Pang, Joanna. (2023). How Autistic Adults Experience Bereavement: An Interpretative Phenomenological Study. doi:10.13140/RG.2.2.13385.72809.
