New ORCA Survey: Measuring Communication in Rare Neurodevelopmental Disorders
Communication is more than just words. It’s how we express, understand, and engage with others. For individuals with rare neurodevelopmental disorders, communication abilities can vary widely, and many individuals rely on nonverbal methods to communicate.
The Simons Searchlight Team
That’s why Simons Searchlight launched the Observer-Reported Communication Ability (ORCA) measure, a caregiver-reported survey that empowers families to share their expert knowledge and assess communication across all methods, including speech, signs, gestures, AAC devices, and more. ORCA focuses on three key areas:
- Expressive Communication – How an individual shares thoughts using speech, signs, gestures, sounds or devices.
- Receptive Communication – How an individual understands and processes spoken or signed language.
- Pragmatic Communication – How an individual uses communication in social interactions.
By capturing all forms of communication, ORCA offers a more comprehensive and accurate understanding of communication abilities in individuals with rare neurodevelopmental disorders.
Why Your Participation Matters
By completing the ORCA survey, families can help researchers:
- Identify patterns in how individuals communicate across different genetic conditions, including both verbal and nonverbal methods.
- Improve understanding of all communication abilities, from speech and gestures to AAC devices and other nonverbal forms.
- Guide the development of better, more robust resources and interventions for individuals with neurodevelopmental disorders, meeting them where they are in terms of communication.
Quick and Easy to Complete
ORCA is designed to be straightforward and accessible for families. It takes just 10 to 15 minutes for a parent or caregiver to complete independently, without needing help from a doctor or speech-language pathologist.
Your voice matters! ORCA collects information that helps researchers shape future studies and build support systems that reflect our community’s needs.
How to Participate
If you’re a Simons Searchlight participant and noted at registration or in the Brief Development Update that your dependent is nonverbal or minimally verbal, you’ll see the ORCA survey assigned to you.
Log in to your Simons Searchlight dashboard today to learn more and complete ORCA.
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