Parents of children with autism spectrum disorders (ASD) often struggle with the question of how and when to share information with their child about their diagnosis. As a Developmental Pediatrician caring for many patients with ASD, I have discovered there is very little research about parents' disclosure of the diagnosis to their child. Families as well as professionals would benefit from a systematic study looking at this issue.
Cohen Children's Medical Center of New York is conducting a major national study focused on parents' perspectives and experiences related to sharing information about the diagnosis with their child with ASD. If you are a parent of a child from 8 to 25 years of age who has been diagnosed with ASD (including Asperger's Disorder or PDD), we would like your input. We want to hear from those of you who have spoken to their child about their diagnosis as well as those who have not yet had this discussion.
Please click on the link below to help other families by participating in this important research study:
This link is to an anonymous on-line questionnaire inquiring about your experience. The questionnaire will take about 15 minutes to complete.
If enough families complete our questionnaire, we hope to:
- Have the most representative study done to date based on a large national sample of respondents
- Give voice collectively to the experiences of hundreds of families
- Provide information to professionals so they can better support families in this process going forward
A few important re-assurances:
- Anonymity: All responses are anonymous
- IRB Status: Our study has been reviewed by the Institutional Review Board at Northwell Health and approved as an EXEMPT study. (Letter of exemption available upon request.)
- Conflicts of Interest: None
- Outside Sponsors or Funding: None