Parents’ Experiences Regarding Sharing the Diagnosis of ASD with Their Child

Working Together to Support Parents of Children with ASD

Cohen Children’s Medical Center of New York is conducting a national study looking into parents’ experiences regarding sharing the diagnosis of ASD with their child. Parents of children from ages 8 to 25 diagnosed with ASD are eligible to participate, even if they have not yet shared the diagnosis with their child.

By way of reassurance,

Anonymity: All responses are anonymous
IRB Status: Our study has been approved by the Institutional Review Board at Northwell Health as an EXEMPT study. (Letter of exemption available upon request.)
Conflicts of Interest: None
Outside Sponsors or Funding: None

Thank you in advance for your cooperation in forwarding the e-mail below to parents of children with ASD. If you would also like to receive a copy of our findings, please let us know and we would be happy to share these with you as well.

Alyson Gutman MD
Developmental & Behavioral Pediatrics
Steven & Alexandra Cohen Children’s Medical Center of New York
New Hyde Park, NY
https://childrenshospital.northwell.edu
Office: 516 802-6100
ASDDisclosureStudy@northwell.edu
Assistant Professor of Pediatrics
Zucker School of Medicine at Hofstra/Northwell

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Dear Parent,

We are asking for your help.

Parents of children with Autism Spectrum Disorders 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 an Autism Spectrum Disorder (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 haven’t had the discussion.

Please use the link below to help other families by participating in this important research study:

https://hofstra.co1.qualtrics.com/jfe/form/SV_aY02CDGa1MPkBtX

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

We know this is a busy time of year for people and we appreciate your time and consideration. A copy of our results will be offered to all families who complete the questionnaire.

Thank you in advance for your kind cooperation.

Alyson Gutman MD
Developmental & Behavioral Pediatrics
Steven & Alexandra Cohen Children’s Medical Center of New York

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