Experience Matters

I was recently contacted by two different parties conducting surveys regarding our experiences as the parents of children with autism, and I am happy to post the information about them. Why? Not just because those conducting the surveys would benefit from our experience, but because, in the long run, other parents would benefit as well. Our experience matters to them. Letting our voices be heard matters. If you can, please join me in participating in the following surveys:

Mischelle Miller-Raftery, a doctoral student in psychology at California Southern University, is conducting a study on potential prenatal environmental triggers of autism.  Ms. Raftery is looking to survey at least 50 mothers raising children who have been diagnosed with autistic spectrum disorder (Asperger’s Syndrome, autism, and pervasive developmental disorder-not otherwise specified); and 20 mothers whose children have not been diagnosed. This survey asks general questions about the mother’s environment and lifestyle choices during pregnancy. The participant will be asked to fill in each question for the time period during their pregnancy with the child who was diagnosed with autism. The premise of this study is to look for trends between environmental exposures and autism. Specifically, this study explores multiple exposure combinations which might have occurred during your pregnancy. The goal of this study is to explore the possible environmental influences on autism.

To qualify for the study, the participant must meet the following criteria:
• Their child must have been diagnosed with autism spectrum disorder including Asperger’s Syndrome, autism, and pervasive developmental disorder- not otherwise specified.
• Their baby must have been considered full-term (born after 37 weeks).
• Their child must have no other developmental diagnosis.
• Or, for the control group – Have a child over the age of three with no known diagnosis.

Participation in this study should take about 25 minutes to fill out the questionnaire. The link to the survey is: https://www.surveymonkey.com/s/3YBPGBT, which is open until January 15.

The other survey opportunity is being conducted by researchers at Columbia University’s Institute for Social and Economic Research and Policy. They are currently collecting life stories from parents about our experiences in recognizing our child’s autism, seeking professional help and navigating the available service systems. The goal of this project is to gain a better understanding of the road to diagnosis. We parents have different experiences and observations of our child’s development, and we have different personal resources with which we access care and services. We also differ in the type and extent of our support networks and social relations. And finally, we make different decisions in our quest for obtaining the right diagnosis and care for our child.  The researchers would like to give parents the chance to tell our stories. Participation in the survey may help them understand the heterogeneity of autism as well as how children develop over time.

The life stories of parents of children who have autism are being collected through an online semi-structured survey at http://www.understandingautism.columbia.edu.

Thank you for your time and for sharing your experiences.

2 thoughts on “Experience Matters

  1. Jacquie

    I did both surveys. I read Diary of a Mom today that thanked those who came before us. Maybe someone one day can benefit from our generation speaking out and lending whatever we have.

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