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Genetic Testing for Autism – The Autistic Adult Perspective

August 15, 2022 - November 15, 2022

Genetic testing for autism is seen as controversial by many in the autistic community. However, no studies to date have formally evaluated the autistic perspective about genetic testing related to autism. This study hopes to bridge the gap in understanding between healthcare providers and the autistic community for the benefit of both parties.

What are the goals of the study?

The aim of this study is to assess how autistic adults view genetic testing related to the diagnosis of autism. An additional objective of this study is to assess what impact genetic testing has had on the lives of autistic individuals.

What will happen during the visit or online?

Participants will be expected to complete a 10-15 minute online survey. The first 100 participants will be awarded a $5 Amazon gift card upon completion.

How will this help families?

The perspective gained from our autistic participants could reveal important considerations that are relevant to both the healthcare providers offering the genetic testing, and the parents of autistic children who are making the decision for them. This could, in turn, benefit the autistic community by promoting the delivery of patient-centered care, education, and support. The autistic community may also benefit by allowing their perspective to influence the care that is provided to them.

Eligibility Criteria

Participants included in this study will be autistic individuals who are 18 years of age or older. The diagnostic label of “autism spectrum disorder” has only been in use since 2013, so we will include participants with any of the following autism-related diagnoses: autism, autistic disorder, autism spectrum disorder, Asperger’s syndrome, pervasive developmental disorder, pervasive developmental disorder not otherwise specified, and childhood disintegrative disorder.

View the study flyer here.

Contact Information

Thomas Dent – thomas.dent@uscmed.sc.edu or 847-393-5849

Research Study Website
University of South Carolina - Genetic Counseling Program

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