Love, challenges, and transformation: Raising a child on the autism spectrum

When our son, Peter II (nicknamed Pedi), was diagnosed with autism at age five, we entered a world few parents were prepared for in the early 90s. Although we had noticed developmental differences much earlier, the diagnosis gave a name to what we were experiencing, but offered little to no guidance for the path ahead.

Pedi’s autism was considered moderate and came with additional challenges: ADHD, OCD, and developmental delays. His limited verbal abilities, using only simple two- to three-word phrases, meant communication was often a struggle, leading to frustration that sometimes resulted in self-harm, such as biting his hand until it bled.

What he couldn’t express in words, he found other ways to communicate. He used sign language, physical guidance, and would push and pull others to communicate.  He would point to his favorite places, an act that, over time, helped him learn to name them.

Mental health impact on families

Mental health conditions don’t just affect the individual; they transform entire family systems. After getting married, my husband and I relocated to the San Francisco Bay Area from Missouri. But after Pedi’s diagnosis, our carefully planned California life shifted dramatically. Recognizing the need for extended family support, we made the decision to return to our Missouri roots.

The stress, uncertainty, and constant advocacy required to support a child with complex needs tested our resilience, faith, and mental health every day. Although we had planned to have more children, we made the decision not to, out of concern that it would be unfair to another child given the significant attention Pedi needed.

These challenges taught us invaluable lessons about mental health:

• Support systems are essential. Without our extended family and church community, the journey would have been significantly harder.
• Adaptability becomes a survival skill. We learned to adjust expectations and celebrate different kinds of milestones.
• Professional help makes a difference. Access to appropriate resources made a profound impact.
• Caregiver mental health cannot be neglected. Finding strength through faith, community, and occasional respite was crucial to sustaining our capacity to care for our son.

Finding joy beyond challenges

Despite the difficulties, Pedi’s life was filled with remarkable joy and unique abilities. He sang with perfect pitch in our church choir, excelled at bowling, and showed impressive physical coordination, like bike riding, swimming, and shooting a basketball (although he didn’t quite understand the rules of the game). His friendly spirit and love of simple pleasures reminded us to find happiness in the moment, an important part of mental wellness.

We learned to celebrate small accomplishments with equal enthusiasm: mastering shoe-tying after continued practice; learning to shake hands for appropriate lengths of time rather than holding on too long; and developing the social skills to play appropriately with others. These are milestones often taken for granted, overlooked, or both in typical development.

For other families facing similar journeys, I offer this hard-earned wisdom from life’s lessons:

• Create and expand your support system— whether it’s family by blood or chosen family (non-relatives who love and support you).
• Seek community or create a small community of caring, supportive people in similar situations.
• Celebrate small accomplishments.
• Advocate for the support you or your loved one needs, while trusting but verifying.
• Allow yourself grace.
• Seek out ways to SOAR by affirming and contributing your strengths, identifying opportunities, pursuing aspirations, and celebrating results that come from your unique gifts.
• Plan for the transition to adulthood. Obtain legal guardianship when your loved one turns age 18 so you can continue advocating on their behalf.

Turning pain into purpose

After Pedi’s passing in 2022 at age 35, we’ve reflected deeply on how his presence enriched our lives. Through him, we learned tenacity, deepened our faith, and connected with a community we would never have known otherwise.

Mental health awareness isn’t just about understanding diagnoses. It’s about recognizing the humanity in each person, regardless of their challenges. It’s about creating a world where differences are celebrated and accommodated, families are supported, and everyone has the opportunity to contribute their unique gifts.

For families currently navigating a diagnosis, mental health challenges, or a caregiver journey, you are not alone. Your journey matters, your struggles are valid, and there is hope and help available. Take it day by day, and know that even in the hardest moments, you are growing in ways you may only come to recognize later.

Belinda Fennessey holds a Bachelor of Science in psychology and is a retired customer service manager for the Department of the Treasury. She also served as president emeritus of the women’s ministry and as church administrator. Most importantly, she is the loving mother to Peter Fennessey II and wife to her devoted husband, Peter Fennessey, Sr.

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