When we talk about autism, the focus always lands where it should: therapies, accommodations, education plans, sensory supports, inclusion. But there’s a quieter group standing just offstage. The parents sleeping lightly with one ear open. The siblings growing up faster than they should.
The parents juggling appointments, meltdowns, paperwork, and work deadlines.
They ares carrying emotional labour home at night. And a hard question sits in the background: Who cares for them?
The Invisible Load
Caring for an autistic child or adult can be beautiful, meaningful, and fiercely loving. It can also be exhausting in ways most people never see. It’s the constant planning, advocating, explaining, worrying about the future , hyper-caution in public spaces, guilt when caregivers want a break. It is a full-time mental occupation.
Many caregivers quietly experience burnout, anxiety, depression, financial strain, and social isolation — while feeling like they’re not allowed to complain because “their child needs them more. “But here’s the truth: Supporting caregivers isn’t selfish — it’s essential. When caregivers collapse, the whole system collapses.
Not clichés. Not “you’re so strong. “Real support. Things like: respite, sleep, emotional support, practical training. Sometimes the most radical help is simply someone saying: “You don’t have to do this alone.” # What caregivers need#
If there’s one intervention that changes everything, a few hours, a day, a weekend, time to breathe without monitoring every sound, time to be a person, not just a caregiver. Respite isn’t a luxury – It’s maintenance. Just like you wouldn’t expect a car to run forever without fuel, you can’t expect caregivers to function without rest.# The power of respite#
We need to stop glorifying exhaustion. Caregiver burnout shouldn’t be a badge of honour. Asking for help shouldn’t feel like failure. Taking breaks shouldn’t come with guilt. And systems shouldn’t assume families will just “figure it out. “Caring for caregivers is part of caring for autistic people. #Changing the conversations#
If You’re a Caregiver Reading This
You’re not weak for feeling tired. You’re human. You deserve support, too. And you’re allowed to say: “I need help.” Because the people holding everything together shouldn’t be the ones falling apart.