作者:Larissa L. Faustmann, Mareike Altgassen

摘要原文:The ability to create mental representations of scenes is essential for remembering, predicting, and imagining. In individuals with autism spectrum disorders (ASD) this ability may be impaired. Considering that autistic characteristics such as weak central coherence or reduced communication abilities may disadvantage autistic participants in traditional imagery tasks, this study attempted to use a novel task design to measure the ability of scene imagery. Thirty high-functioning adults with ASD and 27 non-autistic matched control adults were asked to describe imagined fictitious scenes using two types of scene imagery tasks. In a free imagery task, participants were asked to imagine a scene based on a given keyword. In a guided imagery task, participants had to imagine a scene based on a detailed description of the scene. Additionally, narrative abilities were assessed using the Narrative Scoring Scheme. Statistical analyses revealed no group effects in the free and guided imagery of fictional scenes. Participants with ASD performed worse than control participants in the narrative task. Narrative abilities correlated positively with performance in both imagery tasks in the ASD group only. Hence, individuals with ASD seem to show as good imagery abilities as non-autistic individuals. The results are discussed in the light of the differences between imagery and imagination and possible gender differences.

摘要翻译:创建场景的心理表征的能力对于记忆、预测和想象至关重要。在患有自闭症谱系障碍 (ASD) 的个体中,这种能力可能会受到损害。考虑到自闭症患者的特征,如中心连贯性较弱或沟通能力下降,可能会使自闭症参与者在传统表象任务中处于不利地位,本研究尝试使用一种新颖的任务设计来衡量场景表象的能力。 30 名患有 ASD 的高功能成年人和 27 名非自闭症匹配对照成年人被要求使用两种类型的场景意象任务来描述想象的虚构场景。在免费图像任务中,参与者被要求根据给定的关键字想象一个场景。在引导想象任务中,参与者必须根据场景的详细描述想象一个场景。此外,使用叙事评分方案评估叙事能力。统计分析显示,虚构场景的自由和引导意象不存在群体效应。自闭症谱系障碍参与者在叙事任务中的表现比对照组参与者差。仅自闭症谱系障碍组的叙事能力与两项意象任务的表现呈正相关。因此,自闭症患者似乎表现出与非自闭症患者一样好的想象能力。根据意象和想象之间的差异以及可能的性别差异对结果进行了讨论。

作者:W. J. van der Putten, A. J. J. Mol, A. P. Groenman, T. A. Radhoe, C. Torenvliet, J. A. Agelink van Rentergem, H. M. Geurts

摘要原文:Camouflaging (using (un)conscious strategies to appear as non-autistic) is thought to be an important reason for late autism diagnoses and mental health difficulties. However, it is unclear whether only autistic people camouflage or whether people with other neurodevelopmental or mental health conditions also use similar camouflaging strategies. Therefore, in this preregistered study (AsPredicted: #41811) study, we investigated if adults with attention-deficit/hyperactivity-disorder (ADHD) also camouflage. Adults aged 30–90 years filled in the Dutch Camouflaging Autistic Traits Questionnaire (CAT-Q-NL), the ADHD Self-Report (ADHD-SR) and the Autism Spectrum Quotient (AQ). We investigated differences in camouflaging between adults with ADHD, autism, and a comparison group in an age and sex-matched subsample (N = 105 per group). We explored if autism and ADHD traits explained camouflaging levels in adults with an autism and/or ADHD diagnosis (N = 477). Adults with ADHD scored higher on total camouflaging and assimilation subscale compared to the comparison group. However, adults with ADHD scored lower on total camouflaging, and subscales compensation and assimilation than autistic adults. Autism traits, but not ADHD traits, were a significant predictor of camouflaging, independent of diagnosis. Thus, camouflaging does not seem to be unique to autistic adults, since adults with ADHD also show camouflaging behavior, even though not as much as autistic adults. However, as the CAT-Q-NL specifically measures camouflaging of autistic traits it is important to develop more general measures of camouflaging, to compare camouflaging more reliably in people with different mental health conditions. Furthermore, focusing on camouflaging in adults with ADHD, including potential consequences for late diagnoses and mental health seems a promising future research avenue.

摘要翻译:伪装(使用(无)意识的策略表现为非自闭症患者)被认为是晚期自闭症诊断和心理健康困难的重要原因。然而,目前尚不清楚是否只有自闭症患者会伪装,或者患有其他神经发育或心理健康疾病的人是否也使用类似的伪装策略。因此,在这项预先注册的研究 (AsPredicted: #41811) 研究中,我们调查了患有注意力缺陷/多动障碍 (ADHD) 的成年人是否也会伪装。30-90 岁的成年人填写了荷兰伪装自闭症特质问卷 (CAT-Q-NL)、ADHD 自我报告 (ADHD-SR) 和自闭症谱商 (AQ)。我们调查了患有 ADHD、自闭症的成年人和对照组在年龄和性别匹配的子样本(每组 N = 105)中伪装的差异。我们探讨了自闭症和多动症特征是否解释了自闭症和/或多动症诊断的成年人的伪装水平(N = 477)。与对照组相比,患有 ADHD 的成年人在总伪装和同化分量表上的得分更高。然而,与自闭症成年人相比,患有 ADHD 的成年人在总伪装、分量表补偿和同化方面的得分较低。自闭症特征,但不是ADHD特征,是伪装的重要预测因子,与诊断无关。因此,伪装似乎并不是自闭症成年人所独有的,因为患有多动症的成年人也表现出伪装行为,尽管没有自闭症成年人那么多。然而,由于 CAT-Q-NL 专门测量自闭症特征的伪装,因此重要的是要开发更通用的伪装措施,以更可靠地比较具有不同心理健康状况的人的伪装。此外,专注于ADHD成人的伪装,包括对晚期诊断和心理健康的潜在后果,似乎是一个有前途的未来研究途径。

作者:Prof Geraldine Dawson, PhD 、Amber D Rieder, PhD、Prof Mark H Johnson, PhD

摘要原文:Autism spectrum disorder (henceforth autism) is a neurodevelopmental condition that can be reliably diagnosed in children by age 18–24 months. Prospective longitudinal studies of infants aged 1 year and younger who are later diagnosed with autism are elucidating the early developmental course of autism and identifying ways of predicting autism before diagnosis is possible. Studies that use MRI, EEG, and near-infrared spectroscopy have identified differences in brain development in infants later diagnosed with autism compared with infants without autism. Retrospective studies of infants younger than 1 year who received a later diagnosis of autism have also showed an increased prevalence of health conditions, such as sleep disorders, gastrointestinal disorders, and vision problems. Behavioural features of infants later diagnosed with autism include differences in attention, vocalisations, gestures, affect, temperament, social engagement, sensory processing, and motor abilities. Although research findings offer insight on promising screening approaches for predicting autism in infants, individual-level predictions remain a future goal. Multiple scientific challenges and ethical questions remain to be addressed to translate research on early brain-based and behavioural predictors of autism into feasible and reliable screening tools for clinical practice.

摘要翻译:自闭症谱系障碍(以下简称自闭症)是一种神经发育疾病,可以在 18-24 个月大的儿童中可靠地诊断出来。对后来被诊断患有自闭症的 1 岁及以下婴儿的前瞻性纵向研究正在阐明自闭症的早期发展过程,并确定在诊断之前预测自闭症的方法。使用 MRI、EEG 和近红外光谱的研究发现,与没有自闭症的婴儿相比,后来被诊断患有自闭症的婴儿的大脑发育存在差异。对后来被诊断为自闭症的 1 岁以下婴儿的回顾性研究也表明,睡眠障碍、胃肠道疾病和视力问题等健康状况的患病率增加。后来被诊断患有自闭症的婴儿的行为特征包括注意力、发声、手势、情感、气质、社交参与、感觉处理和运动能力的差异。尽管研究结果为预测婴儿自闭症的有前途的筛查方法提供了见解,但个体水平的预测仍然是未来的目标。要把自闭症早期基于大脑和行为的预测因子的研究转化为临床实践的可行和可靠的筛查工具,仍有许多科学挑战和伦理问题有待解决。

作者:Elizabeth Harstad, MD, MPH; Ellen Hanson, PhD; Stephanie J. Brewster, MS, CGC; Rafael DePillis, BS; Anna L. Milliken, BA; Gabriella Aberbach, MSc; Georgios Sideridis, PhD; William J. Barbaresi, MD

摘要原文:IMPORTANCE While the prevalence of autism spectrum disorder (ASD) continues to increase and early diagnosis is emphasized, there is limited information on outcomes for children diagnosed with ASD in early childhood using contemporary diagnostic criteria.

OBJECTIVES To determine the frequency with which children who are clinically diagnosed with ASD at 12 to 36 months of age continue to meet diagnostic criteria for ASD at 5 to 7 years of age and to evaluate whether baseline child-specific and demographic characteristics and receipt of interventions are associated with ASD persistence.

DESIGN, SETTING, AND PARTICIPANTS In this natural history cohort study, children who received a clinical ASD diagnosis at 12 to 36 months of age underwent a research diagnostic assessment at 5 to 7 years of age. Research assessments occurred from August 14, 2018,to January 8, 2022.

INTERVENTION Children received community-based interventions, and parents provided details about interventions received.

MAIN OUTCOMES AND MEASURES The main outcome was persistence of ASD diagnosis based on current functioning. An experienced research psychologist assigned an ASD diagnosis (present or absent) according to criteria from the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) after the research assessment. The research assessment included administration of the Autism Diagnostic Observation Schedule–2, Autism Diagnostic Interview–Research, and a cognitive measure.

RESULTS Of the 213 participants diagnosed with ASD at initial clinical assessment (mean [SD] age, 24.6 [3.9] months; 177 boys [83.1%]), 79 (37.1%) did not continue to meet diagnostic criteria for ASD (nonpersistent ASD) at research assessment (mean [SD] age, 74.3 [7.1] months). All children with nonpersistent ASD had IQ of at least 70, while there was a bimodal distribution of IQ for those with persistent ASD (46 with IQ <70 and 88 with IQ 70).All children received some interventions, and 201 (94.4%) received ASD-specific intervention, mostly applied behavioral analysis. In a multilevel logistic regression model, the only variables associated with increased odds of being in the nonpersistent ASD group at 6 years of age were higher baseline adaptive skills (b coefficient = −0.287 [SE, 0.108]) and female sex (b = 0.239 [SE, 0.064]).

CONCLUSIONS AND RELEVANCE The findings of this cohort study suggest that among toddlers diagnosed with ASD, baseline adaptive function and sex may be associated with persistence of ASD.

摘要翻译:重要性  虽然自闭症谱系障碍 (ASD) 的患病率持续增加,并且早期诊断受到重视,但关于使用当代诊断标准在幼儿期诊断为 ASD 的儿童的结果信息有限。

目的  确定在 12 至 36 个月大时被临床诊断为 ASD 的儿童在 5 至 7 岁时继续满足 ASD 诊断标准的频率,并评估基线儿童特异性和人口特征以及是否接受干预措施与 ASD 持续存在相关。

设计、设置和参与者  在这项自然史队列研究中,在 12 至 36 个月大时接受临床 ASD 诊断的儿童在 5 至 7 岁时接受了研究诊断评估。研究评估于2018年8月14日至2022年1月8日进行。

干预  儿童接受基于社区的干预,家长提供有关所接受干预的详细信息。

主要结果和措施  主要结果是基于当前功能的 ASD 诊断的持续性。研究评估后,经验丰富的研究心理学家根据《精神障碍诊断和统计手册》(第五版)中的标准指定 ASD 诊断(存在或不存在)。研究评估包括自闭症诊断观察表 – 2 的管理、自闭症诊断访谈研究和认知测量。

结果  在初次临床评估时诊断为 ASD 的 213 名参与者中(平均 [SD] 年龄,24.6 [3.9] 个月;177 名男孩 [83.1%]),79 名 (37.1%) 没有继续满足 ASD 诊断标准(非持续性 ASD) )在研究评估时(平均 [SD] 年龄,74.3 [7.1] 个月)。所有非持续性自闭症儿童的智商至少为 70,而持续性自闭症儿童的智商呈双峰分布(46 名智商<70 和 88 名智商≥70)。所有儿童都接受了一些干预措施,其中 201 名(94.4%)接受了针对 ASD 的干预措施,主要是应用行为分析。在多级逻辑回归模型中,与 6 岁时属于非持续性 ASD 组的几率增加相关的唯一变量是较高的基线适应技能(b 系数 = -0.287 [SE,0.108])和女性(b = 0.239) [SE,0.064])。

结论和相关性  这项队列研究的结果表明,在诊断患有自闭症谱系障碍 (ASD) 的幼儿中,基线适应功能和性别可能与自闭症谱系障碍 (ASD) 的持续存在相关。

作者:

Guillon,Q (Guillon,Quentin)  ; Baduel,S (Baduel,Sophie) ; BejaranoMartín,A(Bejarano-Martin, Alvaro) ; CanalBedia,R (CanalBedia,Ricardo) ; MaganMaganto,M (Magan-Maganto, Maria) 等;

摘要:

Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015-2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect. Lay abstract Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one’s own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.

利用来自欧盟自闭症谱系障碍(2015-2018年)网络的数据,调查了对自闭症检测过程的满意度及其决定因素。共有1342名家庭成员参与了在线调查,其中包括1278名家长,收集了有关他们对孩子早期自闭症检测经验和满意度的信息。总体而言,满意度水平在不同受访者之间差异较大。发现与较低满意度相关的个体经历包括难以获取有关检测服务的信息,首次担忧时缺乏专业指导和支持,自行找到诊断服务以及确认担忧后与专家首次预约之间延迟超过4个月等。通过支配分析方法,我们进一步确定了首次担忧时的专业指导和支持是满意度水平的最重要预测因素。这些发现凸显了需要改进的检测过程方面,并因此与指导卫生管理部门朝着实施相应行动相关。简明摘要对于自闭症早期检测过程的满意度水平,首次担忧时的专业指导和支持似乎是一个重要的预测因素。在这项研究中,我们分析了1342名家庭成员(包括1278名家长)的观点,他们完成了一个在线调查表格,收集了有关他们对孩子早期自闭症检测的经验和满意度的信息。具体来说,我们感兴趣的是特定的检测过程经历如何与满意度相关,并且是否能够确定重要的满意度预测因素。检测过程是一个情感上充满挑战的时期,常常被描述为痛苦、混乱和漫长。了解他们的经历对于采取适当的行动以改善检测过程至关重要。在我们的样本中,对检测过程的满意度水平在不同受访者之间差异很大。在我们考虑的不同经历中,受访者是否在首次担忧时获得了专业指导和支持解释了大部分这种差异。我们还发现,难以获取有关检测服务的信息、首次担忧时缺乏专业指导和支持、自行找到诊断服务以及确认担忧后与专家首次预约之间的延迟都与更大的不满意可能性相关。这项研究的发现突显了家长与专业人员关系在检测过程中的重要性,并对于卫生管理部门改进检测过程具有重要的实践意义。

作者:

Cheung, PPP (Cheung, Phoebe Pui Pui)  ; Lau, BWM (Lau, Benson Wui Man)

摘要:

Altered sensory processing and perception has been one of the characteristics of autism spectrum disorder (ASD). In this chapter, we review the neural underpinnings of sensory abnormalities of ASD by examining the literature on clinical, behavioral and neurobiological evidence that underlies the main patterns of sensory integration function and dysfunction. Furthermore, neural differences in anatomy, function and connectivity of different regions underlying sensory processing are also discussed. We conclude that sensory integration intervention is built on the premise of neuroplasticity to improve function and behavior for individuals with ASD.

改变的感觉处理和感知一直是自闭症谱系障碍(ASD)的特征之一。在本章中,我们通过检查有关临床、行为和神经生物学证据的文献,来回顾ASD感觉异常的神经基础,以了解感觉整合功能和功能失调的主要模式。此外,还讨论了不同区域神经解剖、功能和连接性的神经差异,这些区域是感觉处理的基础。我们得出结论,感觉整合干预建立在神经可塑性的前提上,以改善ASD患者的功能和行为。

作者:

Chang, JC (Chang, Jung-Chi) [; Lai, MC (Lai, Meng-Chuan) ; Tai, YM (Tai, Yueh-Ming)  ; Gau, SSF (Gau, Susan Shur-Fen)

摘要:

Cross-sectional research has demonstrated the overrepresentation of gender dysphoria in children and adults with autism spectrum disorder. However, the predictors and underlying mechanisms of this co-occurrence remain unclear. This follow-up study aimed to explore baseline (childhood/adolescence) predictors for the follow-up (adulthood) self-reported wish to be of the opposite sex and to investigate its mental health correlates in a sample of 88 autistic individuals as compared with 42 typically developing controls. An item on the Adult Self-Report Inventory-4, “I wish I was the opposite sex,” was used. We compared mental health symptoms between adults with and without this item endorsement. We used prediction models to explore family and autism-related predictors in childhood/adolescence to endorse this item in adulthood. There were more adults endorsing the item in the autism spectrum disorder group compared with the typically developing group. Autistic adults who endorsed the item experienced more mental health challenges, more bullying victimization, more suicidal ideations, and worse quality of life. Lower parent-reported family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. It is necessary to raise more attention to gender development and related mental health impact in autistic individuals. Lay abstract Autistic people/people with autism spectrum disorder are more likely to experience gender dysphoria. However, the possible longitudinal predictors and underlying mechanisms of this co-occurrence are unclear. To fill this knowledge gap, we assessed 88 people with autism spectrum disorder and 42 typically developing individuals at their average ages of 13.0 (baseline, childhood/adolescence) and 20.2 years old (follow-up, adulthood). At follow-up, their endorsement on the item “I wish I was the opposite sex” was used to evaluate gender dysphoric symptoms. We compared mental health symptoms between adults with and without this item endorsement at the follow-up assessment. We explored parent-reported family and autism characteristics-related predictors in childhood/adolescence to this item endorsement in adulthood. We found that more autistic adults reported the wish to be of the opposite sex than did typically developing individuals. Autistic adults who endorsed this item experienced more mental health challenges, more school bullying and cyberbullying, more suicidal ideation, and worse quality of life. Moreover, parent-reported lower family support and more stereotyped/repetitive behaviors during childhood/adolescence predicted the self-reported wish to be of the opposite sex in adulthood in autistic individuals. More attention and support should be provided to autistic people regarding gender development and related mental health and quality of life impact, especially during the transition period to young adulthood.

横断面研究表明,自闭症谱系障碍的儿童和成年人中存在着性别认同问题的过度表现。然而,这种共同发生的预测因素和潜在机制尚不清楚。本跟踪研究旨在探索基线(童年/青少年)对于随后(成年)自报希望成为异性的预测因素,并在一个由88名自闭症个体和42名典型发展对照组成的样本中研究其心理健康相关性。使用了《成人自我报告清单-4》上的一项:“我希望成为异性。”我们比较了有无此项声明的成年人之间的心理健康症状。我们使用预测模型探讨了儿童/青少年时期家庭和与自闭症相关的预测因素与成年时是否声明这一项之间的关系。自闭症谱系障碍组中有更多的成年人承认了这一项,与典型发展对照组相比。承认了这一项的自闭症成年人经历了更多的心理健康挑战、更多的欺凌受害、更多的自杀意念和更差的生活质量。在自闭症个体中,儿童/青少年时期较低的家长报告的家庭支持和更多的刻板/重复行为预测了成年时报告希望成为异性的愿望。有必要更加关注自闭症个体的性别发展及其相关的心理健康影响。

作者:

Leno, VC (Carter Leno, Virginia); Wright, N (Wright, Nicola)  等;

摘要:

Mental health problems are prevalent in autistic youth, but the underpinning mechanisms are not well explored. In neurotypical youth, stressful life events are an established risk factor for mental health problems. This study tested longitudinal bidirectional associations between family-level stressful life events and mental health problems and whether these were moderated by cognitive flexibility, in a cohort of autistic children (N = 247). Family-stressful life events, assessed using the parent-reported Family Inventory of Life Events and Changes, and mental health problems, assessed using the teacher-reported Child Behavior Checklist Internalizing and Externalizing Symptoms subscales, were measured at multiple points between 7 and 11 years. Analyses showed no significant pathways from internalizing or externalizing symptoms to family-stressful life events or from family-stressful life events to internalizing or externalizing symptoms. There was some evidence of moderation by cognitive flexibility; the family-stressful life events to internalizing symptoms pathway was non-significant in the group with typical shifting ability but significant in the group with clinically significant shifting problems. Information about family-level stressful life event exposure and cognitive flexibility may be helpful in identifying autistic youth who may be at higher risk of developing mental health problems. Established risk factors for mental health problems in neurotypical populations are relevant for understanding mental health in autistic youth. Lay abstract Experiencing stressful life events, such as a parent having had serious illness, parental divorce, bullying and victimization, is known to increase risk for mental health difficulties in neurotypical children. However, few studies have looked at whether stressful life events have a similar impact in autistic youth and if any individual characteristics may moderate the impact of said life events. In this study, we tested whether in autistic children aged 7-11 years, exposure to family-level stressful life events predicted later mental health symptoms (and vice versa). We also tested whether associations between stressful life events and mental health symptoms differed depending on the child’s level of cognitive flexibility. We found stressful life events only predicted internalizing symptoms (such as anxiety and depression) in children with clinically significant difficulties in cognitive flexibility (as rated by their parents). Mental health symptoms did not predict future exposure to stressful life events. Results suggest that information about exposure to stressful life events and cognitive inflexibility may be helpful in identifying autistic children who may be at risk of developing anxiety and depression symptoms.

自闭症青年普遍存在心理健康问题,但其基本机制尚未得到充分探索。在神经典型青少年中,应对紧张生活事件是心理健康问题的已知风险因素。本研究在一组自闭症儿童(N = 247)中测试了家庭级紧张生活事件与心理健康问题之间的纵向双向关联,并探讨了认知灵活性在其中的调节作用。使用父母报告的家庭生活事件及变化量表进行家庭级紧张生活事件评估,并使用教师报告的儿童行为量表内在化和外在化症状子量表进行心理健康问题评估,评估时间跨越了7至11岁之间的多个时间点。分析结果显示,从内在化或外在化症状到家庭级紧张生活事件,或从家庭级紧张生活事件到内在化或外在化症状的路径均不显著。一些证据表明,认知灵活性具有调节作用;在典型转换能力组中,家庭级紧张生活事件到内在化症状的路径是不显著的,但在临床上存在转换问题的组中是显著的。关于家庭级紧张生活事件暴露和认知灵活性的信息可能有助于识别可能更容易发展心理健康问题的自闭症青年。在神经典型人群中已知的心理健康问题风险因素对理解自闭症青年的心理健康具有相关性。

作者:

Tesfaye,R (Tesfaye,Rackeb) ; Courchesne,V (Courchesne,Valerie) ;等;

摘要:

The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth. Lay abstract Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.

《自闭症之声》研究利用新颖的包容性方法获取了自闭症青年的第一人称经验,这些青年具有各种认知和语言能力。对三十一名自闭症青年进行了基于优势的访谈协议,使他们能够以自己选择的方式进行回答。探讨了青年与家庭、学校和社区等环境之间的动态关系。对青年的兴趣、未来计划、各种情绪体验和自闭症经历进行了询问。基于主题分析,出现了六个主题:(1)自闭症身份,(2)思考未来,(3)在自己的条件下寻求社交联系,(4)追求自主权,(5)学校既是压力源又是社交促进者,以及(6)压力和焦虑的经历。自闭症青年描述的经历与通常发育的青少年的许多愿望和挑战相似,但受到他们自身自闭症的独特塑造。我们讨论了自闭症青年分享的这些见解如何促进他们积极参与社区,促进健康,并促进顺利过渡到成年生活。《自闭症之声》表明,与多方利益相关者合作和使用包容性方法是捕捉所有自闭症青年声音的关键步骤。摘要目前,我们对于自闭症青年的青少年时期的理解主要依赖于研究人员、临床医生、家长和教师的专业知识,但很少涉及到他们独特的第一人称经验。我们的研究试图使用《自闭症之声》协议,这是一个半结构化访谈,专门设计和定制,旨在与具有不同语言和智力水平的自闭症青年进行互动,以理解他们在家庭、学校和社区环境中的经验和观点。对年龄在11-18岁之间的31名自闭症青少年进行的访谈分析突出了六个主题:(1)自闭症身份,(2)思考未来,(3)在自己的条件下寻求社交联系,(4)追求自主权,(5)学校既是压力源又是社交促进者,以及(6)压力和焦虑的经历。这些结果突显了自闭症青少年与他们通常发育的同龄人之间的青少年经历中的相似之处和差异之处。我们的研究结果表明,通过消除对自闭症个体经验的假设,并投资于包容性访谈方法,我们可以忠实地捕捉自闭症青年的经验,而不受其沟通和认知能力的影响。能够捕捉和放大这些多样化的声音将有助于自闭症社区积极参与对他们产生影响的研究、临床和政策决策。

作者:Shuran Yang, Dong Han, Huizhi Zhou, Chen Yang, Kun Zhang, Shi Chen, Runxu Yang, Xia Cao, David Grodberg, Xudong Zhao & Chuanyuan Kang

摘要:

The Autism Mental Status exam (AMSE) has demonstrated excellent sensitivity and specificity in Western high-risk population with suspected autism spectrum disorder (ASD). This study aimed to evaluate the psychometric properties of the AMSE in a sample of high-risk Chinese children, and to determine the optimal cutoff score of the Chinese version of the AMSE in supporting ASD diagnosis. 66 young children aged from 2 to 11 years with suspected ASD were enrolled in the present study. A diagnosis of ASD or non-ASD was determined by a Best Estimate Diagnosis protocol according to the DSM-5 criteria. Receiver operating characteristic (ROC) curve analysis was conducted to assess the validity of the AMSE and search for the most effective cutoff score. The ROC curve analysis yields the area under the ROC curve of 0.98 which represents excellent diagnostic accuracy. Findings indicate the optimal cutoff score of the Chinese version of the AMSE was estimated as 6, producing the highest sensitivity of 98% and a specificity of 87%. Preliminary findings of the study suggest the AMSE has promising psychometric properties as an assessment tool for identifying ASD symptoms and supporting diagnostic decision-making in high-risk Chinese children population.

自闭症精神状态检查 (AMSE) 在疑似自闭症谱系障碍 (ASD) 的西方高危人群中显示出出色的敏感性和特异性。本研究旨在评估AMSE在中国高危儿童样本中的心理测量特性,并确定中文版AMSE在支持ASD诊断方面的最佳临界值。本研究招募了 66 名年龄在 2 至 11 岁之间疑似 ASD 的幼儿。根据 DSM-5 标准,通过最佳估计诊断方案确定 ASD 或非 ASD 的诊断。进行受试者工作特征 (ROC) 曲线分析以评估 AMSE 的有效性并寻找最有效的临界值。ROC 曲线分析得出的 ROC 曲线下面积为 0.98,具有出色的诊断准确性。结果表明,中文版AMSE的最佳临界值估计为6分,灵敏度最高,为98%,特异性为87%。该研究的初步结果表明,AMSE具有很有前途的心理测量特性,可作为识别ASD症状和支持中国高危儿童群体诊断决策的评估工具。