"You Don't Know What You Don't Know": Parent Perspectives on Navigating Disability-Related Information and Resources.

van der Miesen et al. (2024) asked a large group of parents what they want for their young kids with disabilities.

Parents listed sports teams, music lessons, play groups, and other everyday kid activities.

The survey also checked how well parents know local programs that offer these experiences.

Almost every parent wanted rich, typical childhood experiences for their child.

Yet most parents said, "I don’t know what’s out there," and those who did know found the list spotty.

Knowledge gaps were uneven—some families heard about plenty, others heard about almost nothing.

Mansell et al. (2004) saw the same thing twenty years ago: parents right after an autism diagnosis felt lost and wanted clearer guides.

Houseworth et al. (2018) used interviews instead of surveys and still heard "the dots just don’t join up," showing the problem lasts past the early years.

Wilson et al. (2023) gives a fix: their Family Navigation tweaks—longer contact, short autism lessons, easier navigator reach—directly target the knowledge gap R et al. mapped.

You can close the information gap today. Start sessions by asking, "What fun activities do you wish your child could join?" Then hand over a short, local list—three names, phone numbers, and websites. Offer to make the first call together. One extra minute in clinic can open a whole childhood of typical experiences.