Neurodivergent grief

This article introduces a theory of neurodivergent grief, explored through the stages of loss outlined by Elisabeth Kubler-Ross in On Death and Dying (1969).

To provide some background, this is something that I personally identify with as a late-diagnosed autistic woman with ADHD who has gone through many and varied experiences which left me feeling lost and untethered.

Kubler-Ross’ stages of loss, which do not run concurrently but often fluctuate between the stages until acceptance is found, are denial, anger, bargaining, depression and acceptance. Not everyone goes through each stage, as loss is a very individual experience. However, for the purpose of this article, I will explore all five stages and relate them to what I call neurodivergent grief, which came about after a period of reflection when a special interest of mine suddenly lost its appeal.

This has been a recurring theme in my life, and in that loss, I came to understand that I would go through a period of grief until I either came to acceptance of that loss or found another special interest to fill the void.

Denial

Kubler-Ross: Shock and disbelief of the loss; feeling numb or wishing that the news was wrong.

Losing a special interest, or hyperfocus, can feel like losing part of your identity. For some neurodivergent people, a special interest gives them a place in this world, and an understanding of something in a world that often brings a sense of not fitting in.

When a special interest loses its importance, searching for it when it no longer has that hold can bring thoughts of denial, especially when this is a recurring theme. For example, I often go through thoughts like, “Not again, why is this happening now, surely this can’t be happening again”. Feeling numb, in a space of waiting and wondering – what now?

Anger

Kubler-Ross: Blaming yourself or others; a sense of frustration or rage.

Losing a special interest, or hyper-focus, can bring self-directed anger tied to thoughts like “Well, what do I do now, why can’t I stick at anything, who am I now?”. This self-directed anger leads to frustration as life can often feel pointless, boring and empty with a lack of direction.

Bargaining

Kubler-Ross: Deal-making, a wish to change the outcome tied in with feelings of guilt.

Losing a special interest, or hyper-focus, can bring strong feelings of guilt about letting yourself or others down. Being a part of something can, for some neurodivergent people, be difficult, as social anxiety can cause the desire to retreat into the safety of isolation. So, when a special interest, or hyper-focus, brings along with it some social interaction, this can be quite empowering.

As such, when it goes, the need for a change of outcome becomes overwhelming, and so the bargaining aspect strengthens. Personally, that bargaining is my internal voice, “Just give it another go, why can’t you just try again, I’m sure you’ll enjoy it”; however, the urge has gone, and I know, from experience, that nothing I do or say will bring it back.

Depression

Kubler-Ross: Pulling away from life, deep feelings of sadness, exhaustion and lethargy.

Life can seem mundane without a special interest. Having nothing to look forward to, as well as feeling that loss of identity, can bring low mood, deep feelings of sadness and sometimes despair. Living in a period of waiting, wondering, and losing hope can bring resentment toward others who just seem to “get it right”.

Acceptance

Kubler-Ross: Learning to live with the change, finding peace.

Coming to the point of acceptance is perhaps the hardest part of this cycle, whether it is attached to the neurodivergent grief, or whether it is grief in general. However, it is achievable and comes from trust and knowing that this is a stage in life and is exactly where you should be, right now.

Navigating the loss of a special interest

Grief comes in many forms and from many avenues. The loss of a loved one, the loss of a relationship, the loss of financial stability. Loss in any form can take us down the path of grief. This article focuses on what I call neurodivergent grief and gives a name to what many neurodivergent people experience: the loss of a special interest, or hyper-focus, which can lead to a loss of identity.

These losses can come through a change of environment. For example, in secondary school, a young adult might excel in a certain subject, which might become their hyper-focus. Moving them to a setting where that subject matter is intensified, like university, and this new space, sometimes in a new area, tied in with a change of social norms, has such an impact that what should have seemed an easy transition can prove to be impossible.

Subject matter that should have been manageable becomes something completely different. The hyper-focus can then become the challenge because rising anxiety around environmental changes affects confidence and eventually leads to a loss of focus, leaving a gap that can seem impossible to fill.

Other times, the loss can come simply because it just does. There can be no rhyme or reason, only an end to the urge to continue with that special interest or hyper-focus. Perhaps these times could be looked upon as a period of rest, a time to re-evaluate and to trust that something else will come along that will help move to that final step of acceptance and bring some balance back into life.