Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder



The world of parenting is filled with joy, milestones, and a multitude of dreams for your child’s future. But for parents raising a child with Autism Spectrum Disorder (ASD), this journey can be interwoven with complex emotions that go beyond the typical joys and frustrations of parenthood. A recent study published in April 2024, titled “Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder” delves into this very concept of grief. The research explores how parents grapple with the reality of having a child with ASD, specifically focusing on the ongoing process of grief and loss they encounter, aptly termed “living-loss.”


Understanding “Living Loss” – A Different Kind of Grief


While the diagnosis of ASD comes with medical considerations and the need for specialist support, the study highlights that for many parents, it’s also about confronting unmet expectations and dreams for their child’s future. Parents may grieve the idea of the neurotypical child they envisioned, the milestones they anticipated celebrating, and the social interactions they dreamt of. This “living-loss” is distinct from traditional grief associated with death. The child is still very much present, but the relationship may not unfold as originally anticipated.


The concept of “living-loss” resonates with many parents who find themselves navigating a new reality. They may feel a deep sense of sadness over the loss of normalcy, the future they envisioned for their child, and even their own sense of identity as they transition into the role of caregiver.


Unveiling the Layers of Grief: A Mosaic of Emotions


The researchers employed a narrative synthesis approach to analyze existing research on parental grief in ASD families. This method allowed them to identify nine key themes that capture the essence of this experience. Let’s explore some of these themes in more detail:

  • The Journey of Becoming a Caregiver: Parents find themselves navigating a new and often demanding role, one that requires adjustments to their own lives and identities. They step into the world of therapies, appointments, and the constant need to advocate for their child’s needs.
  • A Tapestry of Grief Emotions: Sadness, anger, disappointment, and isolation are frequently reported emotions experienced by parents. Coming to terms with the diagnosis can trigger a wave of grief, and these emotions may resurface throughout the child’s development.
  • Loss: Beyond Missed Milestones: The concept of loss extends far beyond missed milestones. Parents may grieve the loss of normalcy, a future envisioned differently, and the social connections they anticipated their child would have.
  • Finding Strength in Partnership: The study suggests that couples may find themselves relying more heavily on each other for emotional support during this challenging time. This shared experience can foster a sense of solidarity and strengthen their bond.
  • Developing Coping Mechanisms: Parents often develop strategies, or what the study terms “dyadic coping,” to manage the challenges of ASD together. This collaborative approach allows them to navigate the complexities of raising a child with ASD as a team.
  • The Unmet Need for Support: The study identifies a gap in support systems for parents coping with the emotional toll of raising a child with ASD. Having access to resources and support groups specifically designed to address parental grief can be invaluable.
  • Finding Strength Amidst the Loss: Despite the grief, parents also report finding strength and resilience. They discover new ways to connect with their child and develop a deeper appreciation for their unique qualities and abilities.
  • A Lifelong Process: Grief is an ongoing process, and its intensity may fluctuate as the child grows and their needs evolve. There may be periods of intense grief interspersed with moments of joy and acceptance.
  • Understanding and Validating the Grief Experience: Parents often report feeling unheard or misunderstood by others who may not grasp the depth of their grief. Recognizing the legitimacy of their grief experiences can be empowering for parents.


Moving Forward: Supporting Parents on this Journey


This research offers healthcare professionals and support systems valuable insights into the emotional landscape of parents raising children with ASD. The concept of “living-loss” sheds light on the complex and multifaceted nature of their grief. By recognizing and validating these experiences, professionals can better equip parents to navigate this challenging journey.


Here are some key takeaways for creating a more supportive environment for parents:

Acknowledge the Legitimacy of Grief:

  • Validate the parents’ emotional experiences and recognize that grief is a normal part of the journey. Don’t dismiss their feelings or minimize their loss.
  • Use empathetic language and phrases like “I understand this must be difficult” or “It’s okay to feel sad or angry.”
  • Allow parents to express their emotions openly without judgment.

Provide Resources and Support Groups:

  • Connect parents with resources and support groups specifically designed to address parental grief in ASD families.
  • Provide information on online communities, forums, or local support groups where parents can connect with others who understand their experiences.
  • Offer educational materials about ASD and grief to help parents gain a deeper understanding of both.

Offer Individualized Support:

  • Tailor support to the specific needs of each family, considering the child’s age, developmental stage, and the family’s unique circumstances.
  • Offer individual therapy or counseling sessions for parents to address their emotional needs and develop coping mechanisms.
  • Partner with parents to create a comprehensive support plan that considers the needs of the entire family, including siblings.

Additional Strategies:

  • Promote Open Communication: Encourage open communication between parents and healthcare professionals. Create a safe space where parents feel comfortable asking questions and expressing their concerns.
  • Empower Parents: Provide parents with educational resources and training programs to help them feel empowered advocates for their child’s needs.
  • Celebrate Milestones: Celebrate milestones and achievements, big or small, to acknowledge progress and reinforce positive behavior.
  • Promote Self-Care: Encourage parents to prioritize self-care activities that help them manage stress and maintain emotional well-being.
  • Advocate for Change: Advocate for improved access to resources, financial assistance programs, and educational opportunities for families raising children with ASD.


By implementing these steps, healthcare professionals and support systems can create a more supportive environment for parents experiencing grief after an ASD diagnosis. This will empower them to navigate this journey with greater resilience, find joy in their parenting experience, and build a fulfilling future for their families.



Is grief after an ASD diagnosis a sign of not loving my child?

Absolutely not. The grief experienced by parents is a natural response to the loss of expectations and dreams for their child’s future. It doesn’t diminish your love for your child in any way. Grieving allows you to process these complex emotions and ultimately build a stronger, more accepting bond with your child.


Will I ever get over the grief of an ASD diagnosis?

The concept of “living-loss” suggests that grief is an ongoing process. It may lessen over time, but it may also resurface throughout your child’s development. The goal is to learn to manage your emotions and find ways to build a fulfilling life alongside your child.


What does “ambiguous loss” mean in the context of grief after an ASD diagnosis?

The concept of “ambiguous loss” highlighted in the study, refers to the uncertainty surrounding an ASD diagnosis. There’s no clear timeline for improvement, and the future can feel unpredictable. Learning about ASD and available resources can help manage this ambiguity and create a sense of control.


How can I deal with the fear of the unknown about my child’s future?

The future can feel uncertain, especially when caring for a child with ASD. Focus on the present and celebrate the small victories. There are many resources available to help you plan for your child’s future, and you don’t have to navigate this alone.


How can I manage feelings of anger or resentment towards the medical community after receiving an ASD diagnosis?

It’s understandable to feel frustrated or angry if you feel the medical system hasn’t adequately addressed your concerns. Express your feelings to your doctor or find a healthcare professional who listens to your questions and provides clear explanations. There are also patient advocacy groups that can offer support and guidance in navigating the medical system.



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