Parental Grief and Diagnosis of Neurodivergent Condition

As a child psychologist or a school counsellor, have you ever found yourself struggling to find words to explain a child’s diagnosis (Neurodivergent children) to their parents or has a parent’s reaction to the diagnosis left you unsure of how to support them? Many mental health professionals encounter these struggles and challenges; thus, you are not alone. Revealing the diagnosis of neurodivergent children is not merely sharing clinical information or DSM criteria. It’s about guiding parents on a journey that can be confusing, overwhelming, and deeply personal. 

For many parents, this moment is life-changing and filled with intense emotional processing. Thus, their reactions can vary even between partners; one may deny the diagnosis while the other becomes sad. But the question is how mental health professionals can provide the right support to parents. Thus, analysing parents’ emotional responses through the psychological framework becomes essential. 

Read More: Psychologists Suggest 9 Things for Parents to Raise Empathetic Children

What is Neurodivergent? 

It is a term used for individuals with neurodevelopmental disorders, meaning that the working of the brain differs from what is typical. In other words, the wiring of the brain is in such a way that, though the brain structures remain the same, the function differs (MEd, 2021). Thus, neurodivergent is an umbrella term that refers to an individual whose brain is diverse from the norms or what is expected by society in terms of neurological functioning.

Understanding Parental Grief 

When a psychologist or mental health professional reveals the diagnosis of the child to the family or the caregiver, it results in both short- and long-term impacts. Studies share that parents go through negative emotions such as anxiety, depression, distress, and a decreased sense of emotional regulation. These emotions mirror the ones that are experienced during grief  (Oreo & Ozgul, 2017). This is because the parents lose the expectations they have for the child and their future. As a society, we have a script of how a child is and when the child is diagnosed with neurodevelopmental disorders, this script is no longer applicable. This one reality unfolds 50 more realities, and all doors seem shut for the child to parents. Therefore, all the expectations become null. In other words, parents experience a “loss of a dream child”. 

Read More: Winnie the Pooh and Neurodivergent Traits: A Psychological Perspective

The Grief Cycle 

Kubler-Ross developed the stages of grief. These five stages are Denial, Anger, Bargaining, Depression, and Acceptance. Let’s see how the cycle works with parents. It should be remembered that these emotional responses are psychological defences that parents are using as a coping mechanism. Thus, the mental health professional’s work is to offer compassion, guidance, reassurance, and empathy to them (Clark & Georgian Court University, n.d.).

1. Denial

In this stage, the parents do not acknowledge the diagnosis as a problem; rather, they deny it. In terms of emotions, this is a defence from the overwhelming reality and simply pushes it away as if it’s not there. For instance, parents might respond, “Children are like that only. I don’t think my child has such an issue. The assessment did not happen correctly.”

2. Anger

It is an emotion that evolves from disappointment and helplessness. The parents might get angry with their partner, professional, or child. For instance, the parent’s response is “How can you say this about my child? I know these are ways to earn money.”

3. Bargaining

This is a negotiation stage to undo the loss. In this stage, parents are ready to do anything with the expectation that the diagnosis will be reversed. For instance, parents respond, “I will leave my job and give all my time to the child. We will send his sibling to the hostel and give all our time to him.” 

4. Depression

This is a stage where sadness, helplessness, and loss of interest come into play, usually displayed as a quiet or numb reaction. There is so much to process that it becomes emotionally overwhelming for parents to do so. For instance, a parent’s response is “Now nothing can change; is that how my child will lead his life” 

5. Acceptance

It’s generally considered the final stage; however, it doesn’t mean it’s a stage of happiness. It is that the parents have come to terms with the reality and start looking forward. The impact of loss is understood, and all decisions are made understanding the condition and needs of the child. Over time, the stage of grief in which parents are changes.

Therefore, understanding the parental emotional state using the lens of grief is essential. It allows the professionals to move beyond the diagnosis, acknowledging the emotional weight that parents carry. Also, the grief lens would help in structuring multifaceted experiences such as changes in daily life, relationships between child and parent, additional responsibility, and restructuring family systems (Clark & Georgian Court University, n.d.). Also, it is not a linear approach; it is quite possible that parents keep shifting through these stages, and both parents can be at different stages at different moments. 

Read More: When Grief Begins with Relief: Understanding Caregivers’ Emotions After Loss

Cultural Norms, Society, and Grief

Let’s try to understand the cultural and societal role in this grief that has come from the loss of a dream child. At some point in time, people have experienced grief due to the loss of a loved one. Socially, this phenomenon is accepted by the community. The community emotionally supports the family during this period of time. However, when we look at the grief parents go through in cases of child diagnosis, it is not accepted by society. Additionally, few people come for their emotional support. Rather, family is looked down on, blamed for the diagnosis, and judged for their parenting role. Also, the stigma associated with mental health persists and is more prevalent in the case of children. 

Other Impact 

Many factors accompany grief; these are as follows (Clark & Georgian Court University, n.d.):

• Increase in responsibilities: the parents, being the primary caregivers, face increased responsibilities. Behaviour or emotional symptoms of the child are also responded to by the parents. 
• Decrease in Social Interaction: As explained above, society considers parents to be blamed for the child’s issues and problems. Relatives, extended families, and even friends step back, and parents start experiencing social isolation. Additionally, with an increase in responsibilities, parents themselves cut off social interaction. Even the parents of other children refrain from interacting with the child. This makes the child also experience isolation. 
• Financial stress: Following the diagnosis, therapies begin. The sessions have their own fee, thus giving additional financial costs to parents. For many, this cost becomes difficult, and they cut down on other expenses to make ends meet. 
• Self-Doubt: Many parents don’t have an understanding of how to take care of neurodivergent children and doubt their skills to take care of their child. Thus, left with a feeling of guilt. 
• Self-Blaming: As society judges them and discriminates, parents internalise these aspects, and self-blaming could be observed. This self-blaming stems from the fact that they are not good parents. 
• Family Dynamics: The relationship among family members, especially the parent-child relationship, is highly influenced, and parents’ relationship with each other also gets affected. If the child has a sibling, the relationship among them also changes, and the relationship of parents with siblings is impacted too. The family may not talk about their experiences with each other. Or only the discussion is about the diagnosis, leaving the sibling’s emotions behind. 

Journey to Acceptance

The moment the diagnosis is revealed to parents, the “new normal” begins as a response to the loss. Parents’ acceptance involves coming to terms with the new normal and understanding the loss of what can no longer be. The parental reaction to the diagnosis can vary; the point is to locate them on the grief cycle, acknowledge their emotions, and empathise with them. The understanding is that denial, bargaining, despair, and anger are all defence mechanisms that parents use to protect themselves. 

Every parent will have their own journey as the experiences are influenced by the age of the child, the severity of symptoms, intervention received previously, etc. As a professional, it is essential to understand that families deal with pain, confusion, despair, intense emotions, and much more. They have numerous questions popping into their mind about the child’s future, doubting their capabilities, and fearing the reaction of family members and society. Therefore, they require counsellor support in this acceptance. The response of professionals should involve the factors of normalising and empathy. 

The Role of Professionals

Empathy is not just walking in the shoes of others but understanding their emotions. Also, responding in a way that they know that their feelings are acknowledged. Normalising is validating parents’ feelings and giving them time and space to process these feelings. For example, “Things are making you feel frustrated, or there is a lot on your plate which is frustrating for you”.  Ego strengthening is a major goal, as denial, bargaining, anger, and despair all indicate lower ego strengthening refers to building an individual’s ability to deal with stress and adverse situations. And in the face of challenges, maintaining self-worth and resilience. Therefore, the goal of a counsellor is to strengthen the ego, which is growth-promoting. 

Read More: Perfect Parenting Doesn’t Exist And That’s Okay

Psychoeducation & Parent Training 

Though the degree of impact varies, almost all parents face a burden when supporting their child. They may think they don’t have the appropriate skills or might not understand what the child is going through. The two tools that are helpful in supporting parents are psychoeducation and parental training. 

Psychoeducation is a process of intervention where the professional and parents try to break down the jargon of psychology into simple, practical words. Also, facilitates parents to understand how a particular disorder is manifested in the child. Thus, helping them to identify the needs of the child. Giving them coping strategies to deal with the symptoms of a child (Syed et al., 2024). 

Parental training is another intervention where the focus is to facilitate parents in building resources and gaining skills in order to support their child. Also, working on parents-child relationships which have been impacted (Koly et al., 2021). Empowering the parents through the tool of psychoeducation helps them make informed choices during distress. Thus, with this increase in inner resources, the capability and skills required to handle the child’s needs are understood, though the problem remains the same. It’s a journey from coping to hoping. 

Be Cautious: Burnout 

As professionals, we may feel happy and encouraged to work with parents who follow through the parental training sessions. Parents who read extra and look at resources that we haven’t even discovered yet attain a heightened understanding of the manifestation of symptoms in their child. However, it’s an alert sign of burnout.  Burnout refers to the physical and mental exhaustion caused by prolonged stress.

As we are aware of parents’ intense emotions when they work ahead with a child, there is a risk of burnout. Thus, it is important that, as professionals, we keep reflecting with parents on their journey. Helping them to understand that it’s not a one-day or one-week thing; this is lifelong. Facilitating parents to self-care, engaging socially with parental groups to discuss their emotions, and knowing when to take a break. Recognising and celebrating small achievements with them. 

Read More: Parenting Through Adolescence: Understanding Parents’ Emotional Struggles

Conclusion

The birth of a child brings in many expectations about how a child will be or their future. However, a diagnosis of neurodevelopmental disorders flips the picture as parents experience grief. They struggle to accept the new normal. Many other factors impact them, such as increased responsibilities, social isolation, self-doubt, financial burden, etc. The role of mental health professionals is to facilitate parents in this journey toward acceptance. The role of empathy, normalisation, ego strengthening, psychoeducation, and parental training helps in developing the inner resources and skills required.  

“What matters to professionals is the entire family and not just the child.”

References +

• Clark, C. L. & Georgian Court University. (n.d.). Parent Experiences of Grief when Caring for a Child with a Diagnosed Mental Health Disorder. In Georgian Court University. https://georgian.edu/wp-content/uploads/Clark-Christine-2022.pdf 
• MEd, N. B. M. (2021, November 23). What is neurodiversity? Harvard Health. https://www.health.harvard.edu/blog/what-is-neurodiversity-202111232645 
• Oreo, A., & Ozgul, S. (2007). Grief experiences of parents coping with an adult child with problem substance use. Addiction Research & Theory, 15(1), 71–83. https://doi.org/10.1080/16066350601036169 
• Syed, A., Morandini, H. a. E., Barbaro, P., Watson, P., & Rao, P. (2024). A narrative review of the effects of psychoeducation on children and adolescents with attention deficit hyperactivity disorder. Psychology in the Schools, 61(9), 3465–3496. https://doi.org/10.1002/pits.23228 
• Koly, K. N., Martin-Herz, S. P., Islam, M. S., Sharmin, N., Blencowe, H., & Naheed, A. (2021). Parent-mediated intervention programmes for children and adolescents with neurodevelopmental disorders in South Asia: A systematic review. PLoS ONE, 16(3), e0247432. https://doi.org/10.1371/journal.pone.0247432