Summary of Project ProsoFamily
The problem: We are frequently contacted by parents who, concerned about face recognition in their child, are coming across the term ‘faceblindness,’ or prosopagnosia, for the very first time. They have so many questions and we do everything we can to answer those questions. But it is often not feasible for us to answer all of these questions via email or in a single phone call. Also, we are not able to give a first-hand-parent perspective or represent the wide range of experiences that families have had.
The solution: We compiled a list of questions designed to bring out answers to ‘hot topic’ questions that many families have. We sent these questions to families who have children with prosopagnosia and to adults with prosopagnosia. They typed out their answers and sent them back to us, agreeing to have their answers posted publically and anonymously.
The result: On this page, you will find a compilation of the responses we received. We tried to survey enough families so as to receive a range of responses. Therefore, occasionally you will notice that wisdom received from one family contradicts another. We hope that this accurately reflects the differing experiences that families have had in this domain. We have organized responses into the topics listed below so that you can peruse the ones that are most relevant to you. **
**DISCLAIMER: There is no research to confirm or deny any benefits to you or your child that may result from the information included in Project ProsoFamily. The University of Minnesota does not endorse anything on this page. It is simply words of wisdom from individuals and parents based on their personal experiences for you to adapt as you see fit.
Other ways to connect with families
Occasionally, we are able to connect families directly so that they can share experiences with one another. We do this in two main ways:
- In the summer of 2012, we held a weekend in MN for families with Prosopagnosia to come together and meet one another. This was an amazing experience all around and we hope to repeat it in the near future. Families on our mailing list will be notified of any upcoming meetings.
- We have created a private online group for parents of kids with prosopagnosia to connect with one another anonymously. Families have used this online group as a resource for sharing experiences, asking questions of other families, and getting to know one another. If you are a parent of a child with prosopagnosia and would like to be a part of this group, email us at firstname.lastname@example.org and we will send you an invite.
The results of the survey
Each quote is followed by one of the following classifications:
- Adult – This is an adult reporting on their experiences with prosopagnosia.
- Adult & Parent – This is an individual who is an adult with prosopagnosia and is also the parent of a child with prosopagnosia.
- Parent – This is an individual with a child who has prosopagnosia.
- Researcher – This is a comment made by one of our research team members based on things we have frequently heard from other families in discussions with them, and simply added because the ideas were not reflected in any of the survey submissions.
All quotations were taken directly from the questionnaire responses. Any changes made to complete sentences or to provide clarity are indicated with brackets. All locations and names have been changed or replaced (e.g. “George” is changed to “my son”) to protect the identity of the respondents. When available, the general age of the referenced child is provided behind the classification (e.g. Parent with 10 year old).
Note, all links below lead to PDF files which will require a PDF reader or viewer to open.
On Growing Up with Prosopagnosia
- Strategies for Living with Prosopagnosia
- Telling Others: To share? Or not to share?
- How Others Can Help
On Parenting a Child with Prosopagnosia
- Confirming Suspicions about Prosopagnosia
- Obtaining a Diagnosis of Prosopagnosia in Childhood
- Concerns Parents have Reported
- Telling your Child about Prosopagnosia
- Direct Advice for Parents of ProsoKids from Parents of ProsoKids
On Making School a Positive Experience
- Suggestions for Teachers
- Navigating the School System: IEPs, 504 Plans, Special Education Teams, Etc
- Choosing to Work with the School: Benefits and Issues
If you would like to contribute to our database of responses, simply click the survey link above, answer the questions, and send your answers to email@example.com.