Waisman Center, University of Wisconsin-Madison, 1500 Highland Ave., Madison, WI, 53705, USA.
Boston Medical Center, Boston University School of Medicine, Boston, MA, 02118, USA.
J Autism Dev Disord. 2022 Nov;52(11):4908-4920. doi: 10.1007/s10803-021-05354-5. Epub 2021 Nov 19.
Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis-a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p = .017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p < .001) than later diagnostic group (t[6] = - 2.10, p = .037), and child functioning did not predict family impact (t[6] = -0.31, p = .76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support.
在过去的 10 年中,由于筛查计划的广泛实施,自闭症谱系障碍(ASD)风险的识别率大幅提高;然而,对于在确定风险但在获得正式诊断之前的时间段内(鉴于正式的 ASD 评估等待名单很长,这段时间可能会持续数月至数年),父母对风险的看法和经验了解有限。本研究旨在检查 277 名通过初级保健筛查呈阳性而被确定为 ASD 风险的儿童,在风险识别和正式诊断之间,父母对家庭影响(即孩子的行为对家庭的影响)的看法,这些儿童被诊断为 ASD。我们旨在比较那些孩子符合 ASD 诊断标准和不符合诊断标准的家庭影响。被诊断为非 ASD 的儿童的父母报告了更高的家庭影响基线水平(F[1, 274] = 5.82, p = .017);然而,感知到的孩子行为困难是家庭影响的更强预测因素(t[6] = 13.11, p < .001),而不是后来的诊断组(t[6] = - 2.10, p = .037),并且儿童功能并不能预测家庭影响(t[6] = -0.31, p = .76)。这些结果表明,在该人群中,感知到的孩子行为困难是家庭影响的更强预测因素,而不是后来的诊断类别,应将其视为家庭支持的重要因素。
J Autism Dev Disord. 2022-11
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