University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Portland State University, Portland, OR, USA.
J Neurodev Disord. 2024 Aug 17;16(1):47. doi: 10.1186/s11689-024-09561-w.
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.
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.
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.
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.
新兴生物标志物技术（例如 MRI、EEG、数字表型、眼动追踪）有可能将自闭症的识别提前到生命的第一年。我们调查了家长对基于生物标志物的婴儿期测试预测后期自闭症诊断的预期效用和影响的看法。
对婴儿的父母进行了访谈，以确定他们对使用新兴生物标志物技术在婴儿期早期（6-12 个月）预测自闭症的接受程度和看法。一组父母有养育自闭症儿童的经验（n=30），另一组父母则没有（n=25）。采用归纳定性编码方法分析家长的反应。
几乎所有父母都对自闭症的预测测试感兴趣，有些父母表示，如果担心婴儿的发育，他们会寻求测试。测试的主要预期优势是能够更早地进行干预。父母还描述了他们对测试结果可能会感到的预期情绪、得知婴儿可能患有自闭症后可能采取的行动、对预测孩子未来支持需求的态度，以及不准确预测的潜在影响。
在定性访谈中，有和没有自闭症育儿经验的婴儿父母都分享了他们对婴儿期第一年进行自闭症预测测试的预期动机和担忧。测试的主要动机是有更多的时间准备和尽早干预，但这可能受到家庭资源和服务可用性的限制。讨论了对结果进行伦理沟通、公平早期干预和未来研究的影响。
