What is a Caregiver?

You might already be a caregiver—here’s what that can look like

A caregiver is anyone who helps another person manage their health, daily needs, or overall well-being—often without pay. You might be a caregiver if you:
  • Help a family member, partner, friend, or neighbor with everyday tasks
  • Coordinate or attend medical appointments
  • Manage medications or health-related needs
  • Provide emotional support, check-ins, or advocacy
  • Assist with household responsibilities or transportation
  • Step in regularly because someone relies on you
If you see yourself in any of these roles, you can identify as a family caregiver—even if you’ve never used that term before. Caregiving looks different for everyone, but every caregiver plays a vital role and deserves recognition and support.

The Caregiver’s Role

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by differences in communication, social interaction, restricted or repetitive behaviors, sensory processing, and executive functioning. Because autism is a lifelong condition, caregivers often engage across all domains of life—from early intervention, education, and social supports, to adulthood, independence, and aging. For caregivers, this means balancing advocacy, adaptation, emotional support, and planning across many life stages.

Autism Spectrum Disorder

Top 3 Things Caregivers Should Know

Autism Is Heterogeneous, and Needs Change Over Time

Each person with autism is different. Some may require significant support; others may be quite independent. Needs may shift over time, especially during transitions (e.g. from school to work, adolescence to adulthood). Caregivers should expect evolution in needs, and plan with flexibility.

Communication, Behavior & Sensory Supports Are Central

Many challenges in autism caregiving stem from communication differences, sensory sensitivities, difficulty with transitions, and behavioral stressors. Supporting communication systems (e.g. AAC), creating sensory-friendly environments, and using consistent behavior strategies can reduce stress and improve daily functioning.

Navigating Systems & Promoting Self-Advocacy Are Ongoing Tasks

Caregivers often must advocate across education, health care, employment, housing, and social services systems. Encouraging self-advocacy, planning for future care, and establishing supports (e.g. respite, peer networks) are vital for the long haul. Also, caregivers need to manage their own emotional well-being and avoid burnout.

Caregiving Resources

Partner Resources

  • The Arc: Family Caregiving in Disability & Autism — The Arc publishes content and perspectives highlighting the unique experiences and needs of family caregivers in the I/DD and autism space. For example, their “We’re Family Caregivers of People With Disabilities — Here’s What We Want You to Know” showcases real caregiver voices. They also advocate broadly for family support services and strong public policies to support caregivers.

  • ASAN (Autistic Self Advocacy Network) — The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN is a national grassroots disability rights organization for the autistic community. Their Autism and Safety Toolkit offers useful strategies for supporting safety and communication in autistic individuals
  • Crisis & Safety Resources for the Autism Community — Tools for crisis support, safety planning, and accommodating autistic persons in mental health or emergencies.
  • The HollyRod Foundation — Dedicated to raising awareness and providing resources to families that have a loved one who has received an autism or Parkinson’s Disease diagnosis; advocating for ethical treatment, inclusion, and access to services and treatment of individuals living with autism or Parkinson’s Disease with the goal of empowering them to live their best lives.

Caregiver Action Network

This resource was developed with support from The Arc.

Explore Your Community Support Options

Personalized Guidance from Caregiving Experts

Personalized Guidance from Caregiving Experts

Available Monday-Friday from 8am – 7pm ET, our experts are ready with the personalized support, guidance, and assistance you need and deserve–for as long as you need it.

(855) 227-3640

24/7 Access to Hundreds of Helpful Resources

24/7 Access to Hundreds of Helpful Resources

The National Caregiver Help Desk App, powered by Carallel, is full of bite-sized resources crafted to help you build skills, validate what you’re feeling, and help you get stuff done.

Use Access Code: CAN

Connection & Community with Other Caregivers

Expert-Led Virtual Fireside Chats

These 30-minute virtual fireside chats address the complex and often difficult topics encountered by caregivers. Sessions are led by Matt Perrin, Carallel’s Director of Caregiver Engagement, and Sheila Schultz, a Carallel Care Advocate.

Community with Other Caregivers

Community With Other Caregivers

Through CAN, Carallel Support Groups give you a place to ask questions, feel understood, and build confidence in your caregiving journey. Access is simple and available when you need it.

Certified Listeners

Connect with Certified Listeners

Looking for someone who really gets it? Get matched with trained listeners who share your lived experience—whether that’s caring for someone with Alzheimer’s, cancer, or another chronic condition.

Facebook Support Group for Caregivers

Online Support Group on Facebook

Join our caregiver community on Facebook to connect with thousands of peers in a welcoming, supportive space.
Ask questions, share experiences, and receive advice any time of day.

We’re meeting caregivers where they are—giving you choices for how you want to connect, whether through expert advice, peer-to-peer empathy, or live support groups.