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Study: Talking About a Diagnosis With a Child With ASD

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 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

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.

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



Thank you in advance for your kind cooperation.

Alyson Gutman MD

Developmental & Behavioral Pediatrics
Steven & Alexandra Cohen Children's Medical Center of New York
New Hyde Park, NY


Office: 516 802-6100

This email address is being protected from spambots. You need JavaScript enabled to view it.

Assistant Professor of Pediatrics

Zucker School of Medicine at Hofstra/Northwell

Minnesota Disability Waiver Research

The University of Minnesota’s Research and Training Center on Community Living (RTC-CL) is working with the Minnesota Department of Human Services’ Disability Services Division (DSD), and Human Services Research Institute (HSRI) to conduct focused discussions as part of a study designed to provide the state of Minnesota with recommendations on the waivers that provide supports to people with disabilities.

The Minnesota Department of Human Services values stakeholder engagement and is interested in learning more about your experiences related to current
waiver services and support, and what could be done to improve the system going forward. This effort represents a continuation of initiatives Minnesota has undertaken to enhance systems of support for individuals with disabilities.

We are interested in hearing from individuals served by Minnesota’s four disability waivers, family members, lead agencies, providers, individuals from culturally and linguistically diverse backgrounds, and members of tribal nations. 

Groups will be held in various locations around Minnesota. Participants will receive a stipend in the form of a prepaid Visa gift card. Compensation for mileage and childcare will also be available. To learn about focus group dates, times, and locations and to registration for a session, please visit z.umn.edu/waiverreimagine.

We hope you are able to join us for these critical conversations, and share your experiences about Minnesota’s HCBS waiver programs.
Direct questions to —
■■ Lynda Anderson, This email address is being protected from spambots. You need JavaScript enabled to view it., 612-626-7220, or
■■ Anab Gulaid, This email address is being protected from spambots. You need JavaScript enabled to view it., 612-624-0730

Early Gaze Behavior in Children

This research is being conducted by Sarah Tuberman, a student in the Clinical Psychology Program at Alliant International University and supervised by Dr. Alan Lincoln at California School of Professional Psychology at Alliant International University, San Diego.

You are invited to take part in a study about how young children look at objects and their hands/fingers. I am trying to learn whether special ways of paying attention to objects and hands/fingers might be linked with later autism symptoms and daily functioning. The purpose of the research is to learn about a variety of early gaze behaviors are linked to autism symptoms and daily functioning.

Parents of children who have a diagnosis of autism as well as parents of children who do not have a history of autism are welcome to participate.

This study will be completed entirely on this website. Please note that this survey will be best displayed on a computer. Some features may be less compatible for use on a mobile device.

Participation in this study will take approximately 30 to 50 minutes to complete.
You will have a chance to win one of eight $60 Amazon gift cards after you participate.
If you agree to be in this study, you will be asked to do the following:
  • Provide demographic and developmental information (e.g., age, gender, date of birth) regarding your child.
  • Read descriptions and view examples (e.g., video and pictures) of characteristics of visual gaze behaviors and then recall if your child ever showed similar behavior.
  • Complete two standardized instruments regarding your child’s behavior in a number of domains and his or her adaptive functioning.
  • If you have access, provide information from your child's most recent psychological or psychoeducational report if you have access (optional)

Seeking participants for online autism/music study

My name is Jeremi Korhonen and I am running research at the University of Glasgow investigating the ways in which individuals on the autism spectrum engage with emotion in music, and why many individuals with autism have such a strong connection with music.

We are seeking adolescent and adult participants with autism spectrum diagnoses who would be willing to spend a moment to complete an online experiment which involves listening to short clips of instrumental music, and then rating each piece of music based on its emotional content. The experiment has ethical approval from the university ethics review committee, takes about 30 minutes to complete, and can be completed at any time in any quiet setting by simply clicking the link below.

The research is the first of its kind, and through it we hope to further our understanding of the strong connection that individuals with autism often have with music, and help improve their lived experience by possibly encouraging engagement with music in their everyday lives.

If you would like to participate, please click here.

How Parents of Children with ASD Make Decisions About Treatment

My name is Jennifer Vetter and I am a doctoral student in Clinical Psychology at Binghamton University (SUNY). Under the supervision of Dr. Jennifer Gillis Mattson and Dr. Raymond Romanczyk, I am conducting a research study to better understand how parents of children with ASD make decisions regarding their child’s treatment. This study has been approved by the Institutional Review Board (IRB). I am looking to recruit parents of children with ASD to take an online survey with an estimated completion time of approximately 30 minutes. Following survey completion, participants may choose to be entered into a drawing to win one of five $50 gift cards.

Click here to take the survey: https://www.surveymonkey.com/r/treatmentsforautism

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