It is so important to understand first, that grief work requires a unique skillset and competence. The understanding of its complexities and the knowledge of how to use various interventions in counselling support with an individual who is autistic is both individual and unique.
Grief is when a loved one dies, a loss is experience or a major change in life has caused distress for an individual and or within their relationship with others. Although grief is a natural healing process, grief emerges initially, as distress caused by the absence of a person who once filled those needs, relationships, parts of our identity and how we functioned in the world. Understanding relationships and attachment in grief work by the counsellor is helpful to best inform a how a client is connected to the death of a loved one. This loss of attachment and bond can cause debilitating or dysregulating grief experiences. The grieving brain has an initial problem to solve, as it must now learn new information in the absence of a loved one and map the old and new world with its loss at the same time. The activity of ones’ brain during grief looks like:
- the prefrontal cortex (the thinking centre of the brain, is underactive
- the anterior cingulate cortex, the emotional regulation centre of the brain, is underactive
- the amygdala, the fear centre of the brain, is overactive.
Autism. The autistic brain has excellent memory for detail. Integrity. Logical thinking abilities, vivid recall for past experiences, data and fact driven and can be calculated decision making. When grief occurs the autistic brain may have challenges in processing social skills and communication, executive functioning skills, experience anxiety or sensory stimulation. Grief is an amplifier and this can effect the autistic brain with (but not limited to):
- disrupted routines and dysregulation
- confusion or seems lost or withdrawn
- can seem distracted, hyperactive, lack impulse control
- increase in repetitive behaviours
- anxiety, anger and or aggression
- rumination
- reassurance seeking
- masking
- may need help to understand the ‘next steps’
Support strategies might include: offering comfort in change of routine, preparing the individual with 5 C’s (more here!). Did I Cause it? Can I Catch it? Can I Cure it?
Who is going to take Care of me? Who will Communicate with me?
Activities and tools that might be helpful include (but not limited to):
- Mindfulness activities to help emotional regulation
- Social stories that can share information, using content, format and voice as a descriptive, meaningful and physically, socially and emotionally safe for the intended audience.
- Journal writing and or memory boxes to reflect on emotions, memories and stories of the loved one.
- Playrooms (and virtual playrooms) to encourage expression of emotions through play
- Arts and new hobbies to create a new and healthy neural patterns in everyday life that can help the individual cope or manage their emotions.
- Books. Finding books that connect with both the individual; children’s books, psychoeducation books for caregivers and or parents or other research articles to support the current experience.
Here is an extensive resource list of Books and Videos relevant to grief and autism.
- Gray, C. (2000). The new social story book. https://ci.nii.ac.jp/ncid/BA53520228
- Helbert, Karla (2012). Finding your own way to grieve: a creative activity workbook for kids and teens on the autism spectrum https://www.perlego.com/book/952188/finding-your-own-way-to-grieve-a-creative-activity-workbook-for-kids-and-teens-on-the-autism-spectrum-pdf
- Kaiser Greenland, Susan (2020). The Mindful Child http://www.susankaisergreenland.com/
- GoZenOnline. (2012, December 4). 4-7-8 Breathing Exercise by GoZen [Video]. YouTube. https://www.youtube.com/watch?v=Uxbdx-SeOOo
- Gaines, Arlen and Polsky, Meredith (2017). I have a Question about death: a book for children with autism spectrum disorder or other special needs
- Alex Lowery speaks about autism. (2020, June 18). Autism & dealing with the loss of a loved one [Video]. YouTube. https://www.youtube.com/watch?v=ocjr8cxsDus
- WrongPlanet- an online community for people on the Autism Spectrum https://wrongplanet.net
Please reach out if you have a any questions or inquiries about my work with grief and autism!