Service Delivery

A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism.

Marsack-Topolewski (2020) · Journal of autism and developmental disorders 2020
★ The Verdict

Parents of adults with autism lean on friends and therapists, not autism groups—bridge that gap.

✓ Read this if BCBAs serving adults with autism and their aging parents.
✗ Skip if Clinicians who only treat young children or work in schools.

01Research in Context

01

What this study did

Marsack-Topolewski (2020) sent a short survey to parents who still care for an adult son or daughter with autism.

The parents listed every person or service they turn to for help. The study counted how many use each kind of support.

02

What they found

Almost every parent leans on a close friend or family member for emotional support.

About half also use formal help like psychiatrists, counselors, or money aid. Only 28% attend autism support groups.

03

How this fits with other research

Brennan et al. (2025) asked parents of younger kids the same questions and got the same answer: a trusted friend or relative is the main support.

Yan et al. (2022) showed that more family support lowers parent stress and boosts involvement in services. This matches N’s finding that parents keep using informal help year after year.

Lasgaard et al. (2010) seems to disagree. Autistic teenage boys say they feel lonely and get little support. The gap makes sense: N asked parents, Mathias asked the teens themselves. Parents may not see the loneliness their child feels.

04

Why it matters

If you work with adults with autism, check the parent’s support list. Emotional help is usually covered, but autism-specific groups are missing. Invite the parent to a local group or online forum. One new contact can cut isolation for both parent and client.

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→ Action — try this Monday

Ask the parent: “Who do you talk to about autism?” If no autism group is listed, hand them a flyer for one.

02At a glance

Intervention
not applicable
Design
survey
Population
autism spectrum disorder
Finding
not reported

03Original abstract

This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services.

Journal of autism and developmental disorders, 2020 · doi:10.1007/s10803-019-04285-6