While many neurodivergencies are present from birth, some are acquired. Even some that are present all along don’t make themselves known until later in life. When parents have a neurotypical child, then “suddenly” have a neurodivergent child – whether this is through having traits recognised and confirmed, or through the acquisition of a neurodivergence – it can be a shock to the system. Rightly or wrongly, a process of grief may begin.
Acquired Neurodivergence
Neurodivergencies that are currently through to be able to be acquired include:
- Acquired Brain Injuries (ABI)
- Post Traumatic Stress Disorder (PTSD)
- And some mental health conditions such as Bipolar Disorder, Obsessive-Compulsive Disorder (OCD), and schizophrenia.
Today (May 20) is Brain Injury Awareness Day.
Acquired Brain Injuries are generally catergorised into traumatic and non-traumatic. Traumatic brain injuries are caused by a blow or jolt that is strong enough to move the brain within the skull, or a penetrating injury to the brain. Non-traumatic injuries can include strokes, lack of oxygen supply (due to heart attack, near-drowning, etc), tumours, aneurysm, or infectious diseases such as meningitis.
While brain injuries, like injuries to other parts of the body, can heal, some people with Acquired Brain Injuries are affected for the rest of their lives.
The Change
There are two types of change that parents of children with acquired neurodivergencies encounter. One is a genuine change, and the other is perceived.
Genuine change could be an Acquired Brain Injury that means your child finds emotional regulation very difficult, or your child developing obsessive-compulsive behaviours that were not previously present.
Perceived change is frequently actually a change in the parent’s own perception. It could be, for example, when they are told their child is autistic. For some parents, this can be confronting and lead them to doubt the goals and expectations they previously had for their child’s life. Of course, being confirmed as autistic does not given any specific limitations at all! But for a parent, confirmation of neurodivergence can be confronting and lead to pessimism.
Grief
When faced with change – real or perceived – that seems negative, difficult, or scary, many people begin a process of grief.
This could be grieving a child’s lost skill, a connection they had with their child that is now impacted, or simply grieving the child they thought they had. The latter is not always a negative as it sounds! Like some parents find themselves grieving the loss of a daughter, despite adoring their transgender son, accepting that your neurodivergent child is not going to be a neurotypical child when you thought they would be… that can take some processing!
Stages of Grief
Most therapists work on either a 5 or 7 Stage model of grief. The 7 Stages of Grief are:
- Shock and Denial (The latter even appears a lot when children have neurotypes confirmed, often because parents feel “But that’s normal! Everyone in our family is like that!” because they have an unconfirmed neurodivergence themselves!)
- Pain and/or Guilt
- Anger and Bargaining
- Depression
- The Upward Turn (feeling more calm and relaxed)
- Reconstruction and Working Through
- Acceptance and Hope
Your Grief
If you, or your child, are grieving for what has been impacted by an acquired neurodivergence, trauma therapists are specifically trained to help you through all of these stages. The last thing either of you need is to feel guilty about feeling guilty! These stages aren’t easy, aren’t fun, and are occasionally met with judgement by others. But they are normal, and there is help out there for you!
And yes, this applies if you’re having a difficult time coming to terms with a confirmation of dyslexia or Tourette’s, or another non-acquired neurodivergence. Accepting that you’re grieving, and asking for help to get through this, is not the same as insisting that a neurotype is a bad thing, or saying that you love your child any less than you did before it was confirmed. It is simply asking for help with something you are finding difficult.
The Upwards Turn, Onwards
There are many positive, inspiring, connecting, wonderful resources and communities to bolster you through the last three Stages. Turn these steps into amazing, powerful, achievements, rather than the final levels of something complex and traumatic.
If possible, draw a line once you reach The Upwards Turn. It doesn’t mean there won’t be any tricky feelings or experiences popping up along the way, but reaching these last three steps means the “bad part” of grief is largely over.
More Than Quirky is available to answer any questions around neurodivergence, strategies, approaches, and experiences, that might empower you in those last three stages of:
- The Upward Turn
- Reconstruction and Working Through
- Acceptance and Hope
Because there is hope. There is so much hope.
The End of Grief?
Many people – myself included – don’t necessarily feel that reaching those final positive steps means the grief is gone. And that’s okay.
Loss of connections, skills, dreams, abilities, plans… that can be confronting and upsetting.
People think that grief slowly gets smaller with time. In reality, grief stays the same size, but slowly life begins to grow bigger around it.
Lois Tonkin
Your Child’s Grief
In the experience of acquired neurodivergencies, your child – particularly older children and teens – may also grieve the life or experiences they had before. It is important that you acknowledge their experience too, and ensure they are adequately supported psychologically.
Unfortunately, many health services treat “the problem” without treating the psychological impacts of “the problem”. For example, a child who – due to an acquired brain injury – loses the ability to speak clearly, may be given speech therapy, physiotherapy, and occupational therapy. If they show signs of anger and frustration, they might be given psychological support in the form of learning emotional regulation, etc.
But imagine if you, as an adult, lost the ability to clearly communicate, and all people wanted to do was teach you to speak as well as possible and not be cross when you can’t! It would be perfectly logical to be frustrated – even depressed – and support, psychological and pharmaceutical, would be available.
Don’t deny your child this same support just because they’re young.
Yes, they’re tough and resilient. But there’s no need to make them fight harder than they need to!