It's a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder.

Researchers asked 117 grandparents who are raising their autistic grandchildren to describe daily life.

The team used open-ended survey questions and grouped answers into four big buckets and 15 themes.

All grandparents had full-time custody; no parents lived in the home.

Grandparents called the job both a battle and a blessing.

They felt 24-hour demands, money worries, and deep loneliness.

To cope they leaned on love, faith, and tiny daily wins like a calm bedtime or new word.

Meier et al. (2012) first showed grandparents act like unpaid case-managers for any disability; Titlestad et al. (2019) zooms in on the heavier load when grandparents are the only caregivers.

Sticinski et al. (2022) found single parents of autistic teens feel starved of social support; the grandparent sample echoes that isolation but adds age-related fatigue.

Eussen et al. (2016) showed that parents gain hope when they make future plans and join community groups; grandparents in the new study rarely mentioned such help, hinting at a service gap.

Bromley et al. (2004) saw high distress in mothers; the grandparent data match the stress level yet reveal different coping tools like spiritual faith rather than formal respite.

If you serve autistic clients, ask who wakes up with them.

When the answer is Nana or Pop, fold them into treatment plans.

Offer flexible meeting times, printed visuals, and grandparent-specific support groups.

A five-minute check-in about their health and finances can keep the home stable and the therapy on track.