Caregiving, Redefined: One Family’s Journey with Autism, Author: Jane Clark, MPA, CPs

When my son was little, I began noticing that his emotions and behaviors didn’t
quite match the developmental milestones in the parenting books. In early
elementary school, those challenges became clearer. My husband and I—both
professionals in the behavioral health field—recognized that we needed help. We
spoke with his teacher, found a child therapist and a child psychiatrist, and
consulted with his pediatrician.

Even with our background, navigating resources and the social services system
was confusing and overwhelming. That experience left me wondering: if it was this
difficult for us, how much harder must it be for families just starting out with no
knowledge of the system?

We spent years in what I think of as the “diagnostic whirlwind.” Over four years,
our son received four different diagnoses. Each new label came with different
treatment plans and services, but none felt quite right. Finally, at age 10, we
received the correct diagnosis: Autism Spectrum Disorder (ASD). That single
answer shifted everything.

With the right diagnosis came the right support, including appropriate medication.
Just one month later, my son looked at me and said something I will never forget:
“Mom—I don’t feel broken anymore.” It was a bittersweet moment. Sweet, because my son finally felt whole and understood. Bitter, because it meant he had carried the heavy belief that he was
“broken” for years. That moment marked a turning point in his life, and we are forever thankful for it.

Through it all, my husband and I never thought of ourselves as “caregivers.” In our minds, caregivers were professionals who provided services in hospitals or homes.

It took time to realize that parents, spouses, siblings, and friends who step into these ongoing supportive roles are caregivers, too. Recognizing that identity is important, because once you see yourself as a caregiver, you understand that you also deserve resources, support, and care for your own mental wellness. That realization is one of the reasons I now volunteer with Caregiver Mental Wellness. Our family was fortunate to have professional knowledge, yet we still struggled. I want to make sure other families don’t feel as lost or alone as we sometimes did. Caregivers often put all of their focus on the person they love, but their own well-being matters just as much.

Supporting caregivers means:

• Awareness: Helping people recognize that what they are doing is caregiving, even if they don’t call it that. Naming the role opens doors to resources and support.

• Connection: Providing safe spaces where caregivers can share experiences and learn from one another. There’s power in knowing you’re not the only one.

• Resilience: Encouraging caregivers to care for themselves—through counseling, peer groups, rest, or small acts of self-kindness.

Self-care isn’t selfish; it’s what allows us to keep showing up. Today, my son is grown. He still navigates life with the unique lens of someone on the spectrum, but he does so with confidence and self-awareness. I remain grateful for the professionals and community members who supported us and for the lessons I learned about patience, resilience, and the strength of advocacy. If I could offer one message to other caregivers, it’s this: you are not alone. The system may be complicated, the path may feel heavy, but there are people and organizations—like Caregiver Mental Wellness—ready to walk beside you.

Being a caregiver doesn’t mean you have all the answers. It means you show up, again and again, with love and determination. And sometimes, that’s exactly what makes the biggest difference.