Parent attitudes towards predictive testing for autism in the first year of life
Aurora M Washington1, Amanda H Mercer2, Catherine A Burrows3
1University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Insights
Parents are interested in early autism prediction using biomarkers to access earlier intervention. Motivations for testing, such as early preparation and intervention, are key, but may be limited by resources and service availability.
Area of Science:
- Neurodevelopmental disorders
- Biomarker technology
- Pediatric healthcare
Background:
- Emerging technologies like MRI and EEG could enable autism identification in infancy.
- Investigating parental perspectives on early autism prediction is crucial.
Purpose of the Study:
- To explore parental views on the utility and impact of infant biomarker-based autism prediction.
- To understand motivations and concerns regarding early autism diagnosis.
Main Methods:
- Qualitative interviews with parents of infants (n=55) were conducted.
- Participants included parents with (n=30) and without (n=25) prior experience parenting an autistic child.
- Inductive qualitative coding analyzed parent responses.
Main Results:
- Most parents expressed interest in predictive autism testing, particularly if concerned about development.
- Earlier intervention was the primary anticipated benefit of predictive testing.
- Parents discussed anticipated emotions, actions, and concerns regarding prediction accuracy and future needs.
Conclusions:
- Parents desire early autism prediction for timely intervention and preparation.
- Familial resources and service availability may impact the feasibility of early intervention.
- Ethical communication, equitable services, and future research are critical considerations.
Background:
Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy.
Methods:
Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods.
Results:
Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction.
Conclusion:
In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed.
More Related Videos
10:11Portable Intermodal Preferential Looking IPL: Investigating Language Comprehension in Typically Developing Toddlers and Young Children with Autism
Published on: December 14, 2012
05:04An Electrophysiology Protocol to Measure Reward Anticipation and Processing in Children
Published on: October 4, 2018
Related Concept Videos
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:21The Nativist Approach