By: Camila Fernandez, PhD & Michelle Hintz, PsyD
Receiving an autism spectrum disorder (ASD) diagnosis for your child is a life-altering moment for many parents. It often brings clarity to long-standing questions about your child’s behaviors but also introduces a complex mixture of emotions and challenges. ASD, a neurodevelopmental condition characterized by difficulties in social interaction, communication, and flexibility, is diagnosed in approximately 1 in 36 eight-year-old children (2.8%). This represents a 22% increase since 2018, attributed to heightened awareness, expanded diagnostic criteria, and improved tools (Bravo-Benítez et al., 2019; Fagan, 2023).
For parents, this diagnosis often marks the beginning of a journey that is as emotional as it is practical. It’s not simply a checklist of stages to complete but an ongoing process of adjustment and growth. Much like the stages of grief, parents often move through periods of confusion, loss, empowerment, and acceptance, often revisiting earlier stages as their child grows and new challenges emerge.
In the article “Supporting Families With Autistic Children” (Fagan, 2023), the author discusses the multifaceted challenges that families of children with autism often encounter. These challenges include heightened stress levels, increased prevalence of mood disorders, marital strain, and social isolation. The article emphasizes the importance of family therapy in addressing these issues, highlighting its role in enhancing communication, restructuring family dynamics, and providing education and support tailored to the unique needs of each family. By fostering a cohesive and supportive environment, family therapy can help mitigate the negative impacts of these challenges and promote the well-being of both the child and their family members.
In this blog post, we’ll explore this journey as a series of interconnected stages, providing insights and actionable strategies for navigating each step. Whether you’re at the beginning of this path or further along, know that this is a journey of love, resilience, and discovery—one that holds opportunities for connection, empowerment, and joy.
The 7 Stages of the Autism Parenting Journey
- Confusion and Self-Blame (Before the Diagnosis)
Before receiving a diagnosis, many parents experience confusion and frustration. Behaviors like sensory sensitivities, resistance to routines, or difficulties with social interactions may seem inexplicable, leading to self-blame and tension within the family. Parents may wonder if they are doing something wrong or fail to see the patterns that point to a deeper explanation.
Action Tip: Start documenting your child’s behaviors and seek professional evaluation early. Observations can help guide discussions with healthcare providers and provide much-needed clarity. Get recommendations for evaluators. Find a professional you trust to evaluate your child – often a child psychologist with a specialty in early childhood development.
- The Diagnosis Moment: Relief Meets Grief
Hearing the words “autism spectrum disorder” often brings mixed emotions. On one hand, the diagnosis validates concerns and opens the door to resources and support systems. On the other, it may bring grief over the imagined future you envisioned for your child. This is not a one-time event; rather, it’s the beginning of an evolving emotional journey often described as chronic sorrow.
Action Tip: Allow yourself to feel both relief and grief—they are natural responses to a complex experience. Join support groups or seek therapy to connect with others who understand.
- Shock and Disbelief (Early Adjustment)
In the initial aftermath of the diagnosis, it’s common to feel disbelief or even denial, especially if your child’s challenges seem subtle or inconsistent. Parents may question the diagnosis or fear the label will define their child.
Action Tip: Take time to process the diagnosis. Consider seeking a second opinion or attending educational sessions about autism to better understand your child’s needs and potential.
- Loss and Chronic Sorrow (Ongoing Adjustment)
Ambiguous loss is a concept that resonates deeply with many parents of children with autism. Unlike traditional grief, which often stems from a clear and defined loss, ambiguous loss arises from ongoing uncertainty and a lack of closure. As M. O’Brien (2007) explains, “The ambiguity inherent in autism—the uncertainty of the child’s future, the variability in day-to-day functioning—creates a sense of loss that is difficult for parents to resolve, leading to ongoing emotional distress.”
Recognizing this unique form of grief is vital, as it helps parents understand that their feelings of sorrow and frustration are valid and an expected part of their journey. Grief doesn’t disappear after the diagnosis—it evolves over time. Milestones, like starting school or struggling with social relationships, can reignite feelings of loss. This ongoing process can feel isolating and emotionally draining, but it also creates opportunities for growth and resilience.
Action Tip: Focus on your child’s strengths and celebrate even small victories. Professional counseling can help you navigate recurring feelings of sadness, anger, or confusion.
- Relief and Empowerment (Embracing the Journey)
As parents adjust to their new reality, many begin to find empowerment and acceptance. They shift their focus from what might have been to what is, celebrating their child’s individuality and advocating for their unique needs.
Action Tip: Partner with educators, therapists, and community organizations to build a support system. Embrace your child’s progress and advocate for their success.
- Navigating Unique Stressors (The Parenting Experience)
Parenting a child with autism involves unique challenges, such as managing meltdowns, navigating communication barriers, advocating in schools, and dealing with social isolation. These stressors can feel relentless, but they are also opportunities to build resilience and find creative solutions.
Action Tip: Build a “village” of support. Surround yourself with professionals, friends, and family members who understand your journey and can provide practical and emotional help.
- Finding Connection (A Journey Worth Taking)
Over time, parents often discover moments of deep connection with their child. These moments may come unexpectedly but are even more meaningful for the challenges that preceded them. This stage reflects a growing appreciation for the unique journey autism parenting entails.
Action Tip: Celebrate your child’s progress and the ways they enrich your life. Cherish the connection you share and the growth you’ve experienced together.
Final Thoughts: A Journey Worth Taking
Receiving an autism diagnosis reshapes your journey as a parent, bringing both challenges and opportunities for growth, understanding, and connection. Grieving the loss of the “hoped-for” child doesn’t mean you love your child any less—it means you’re adjusting to a new path, one that holds incredible potential for joy, love, and discovery.
If you’re feeling overwhelmed, remember that you don’t have to navigate this alone. Reach out for help, find your community, and take it one step at a time. This journey may not look like what you imagined, but it is filled with possibilities and moments of profound connection.
As you move forward, let this roadmap serve as a guide to navigating the path ahead with resilience, compassion, and hope.
References:
Bravo-Benítez, J., Pérez-Marfil, M. N., Román-Alegre, B., & Cruz-Quintana, F. (2019). Grief Experiences in Family Caregivers of Children with Autism Spectrum Disorder (ASD). International Journal of Environmental Research and Public Health, 16(23), 4821. https://doi.org/10.3390/ijerph16234821
Fagan. A (2023, August 15). Supporting families with autistic children: What more can be done? Psychology Today. https://www.psychologytoday.com/us/blog/psychiatrys-thinktank/ 202308/supporting-families-with-autistic-children.
O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56(2), 135–146. https://doi.org/10.1111/j.1741-3729.2007.00447.x.
