The key to being a stronger caregiver

This story was originally published in the November issue of Exceptional Parent Magazine.

Caregiving is not just a labor of love—it is real, demanding work. While we often acknowledge the important work of professional caregivers in settings like daycares and nursing homes, family caregivers—especially those supporting autistic loved ones—face unique challenges that frequently go unnoticed. These dedicated individuals often carry their burdens quietly, without the recognition and support they deserve.

“It can be difficult for others to understand the responsibility that comes with being a caregiver to an autistic child or sibling,” says Lindsay Naeder, vice president of services and supports at Autism Speaks and caregiver to her autistic brother. “As a caregiver, many times the emotional, physical and mental well-being of others rests on your shoulders. Caregivers become experts in looking at everything from their autistic loved one’s point of view, to be able to adapt and plan for whatever may be needed.”

Self care for caregivers

To provide effective care, it’s important for caregivers to remember to also prioritize their own well-being. Without intentional self-care, the demands and pressures of caregiving can become overwhelming, sometimes leading to burnout.

Prioritize your own needs

In certain situations, caregivers may find themselves placing their loved ones’ needs above their own—but this can come at the cost of their own physical and mental health. We see this happen when access to resources or support from sources outside the family are inadequate or hard to find. 

“There is no shame in taking time for yourself and prioritizing time to meet your own needs,” says Lindsay. “Being a caregiver is a huge part of our identity, but by finding time for self-care, you will build the resilience and confidence needed to care for others. Don’t look at it as being selfish to or that you are putting your needs ahead of your loved ones. Reframe that thought to reinforcing your ability to put your best foot forward, for them.”

In the busy routine of caregiving, it’s important to set aside time each day—whether in the morning or at night—to focus on yourself. This could involve journaling, meditating or simply enjoying a cup of tea. The goal is to carve out moments that allow you to recharge.

Embrace time apart

Stepping away from your routine can feel like stepping away from your child or loved one and this can be difficult, especially when they have significant support needs. However, taking breaks is crucial—not only for your benefit but for theirs as well.

“Don’t hesitate to take a break,” advises Lindsay. “Arranging for alternate care so you both can have some time apart is crucial. Even if it’s just a short walk, these moments can be incredibly restorative. Encouraging your autistic loved one to engage in activities they enjoy during this time can enrich their experience and help alleviate any guilt about stepping away. Time apart is essential for both of you, leading to renewed energy when you reconnect.”

Enrolling your loved one in daily programs or activities can be helpful, freeing up time for self-care and completing daily tasks without interruption. These programs can also enrich your loved one’s life, giving them an opportunity to become more independent, meet new people and broaden their experiences.

The Autism Speaks Resource Guide can help you find autism-friendly recreational or respite options in  your area.

Build a support network

Caring for a person with autism often means navigating a world that doesn’t understand their unique needs. This can feel isolating, especially when everyday activities—from grocery shopping trips to family gatherings—turn into complex logistical challenges that feel impossible to take on. 

Caregivers may find themselves increasingly isolated, particularly when they feel that few people around them understand their circumstances. “It can be challenging to participate in spontaneous events or community activities,” says Lindsay. “Caregivers may often opt out of these gatherings to focus on their autistic loved ones, leading to feelings of isolation, particularly when those loved ones are unable to live independently. The weight of this responsibility is immense, especially without a support system.”

Many caregivers feel a responsibility to manage everything on their own, but this can lead to burnout. Instead, it’s helpful to lean on the people around you and ask for help. Whether it is a partner, family member or trusted friend, delegating smaller tasks—like running errands or preparing meals—can help lessen the load and reduce stress.

Connecting with others who understand what you are going through is also essential. Consider joining local support groups or online communities where you can share your experiences, seek advice or simply vent. These connections can provide a sense of belonging when you’re feeling overwhelmed or alone.

By prioritizing self-care and building community, you can replenish the energy needed to continue supporting your loved one. When caregivers thrive, so do their families.