Research in Autism Spectrum Disorders最新文献

What are the experiences and support needs of families of autistic children with Extreme (or ‘Pathological’) Demand Avoidance (E/PDA) behaviours?

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2025-01-01 DOI: 10.1016/j.rasd.2024.102515

Saher Nawaz, Susan Speer

Background

An increasing number of families are seeking assessment and support for autistic children who present with Extreme (or Pathological) Demand Avoidance (E/PDA) behaviours. However, research suggests the needs of these families may not be well understood or met by services. This study identifies their experiences and support needs, focussing on their interactions with services.

Method

Qualitative, semi-structured, online interviews with 21 parents of child(ren) with a formal diagnosis of autism and E/PDA behaviours. Interviews were analysed using an inductive, reflexive thematic analysis at a semantic level.

Results

Four themes describe the distinct experiences of families: (1) Understanding and acceptance of E/PDA behaviours is lacking; (2) Attributing blame: Judgements of E/PDA behaviours by others; (3) Lack of tailored support for E/PDA behaviours; (4) The E/PDA journey results in distress for all family members. Themes form the basis for a new interpretative model of familial experiences of E/PDA in which lack of understanding and acceptance of E/PDA drives neuro-normative judgements about E/PDA behaviours and parenting quality, leading to inadequately tailored support and familial distress.

Conclusion

Parents’ accounts point to a breakdown in service provision for families of children with E/PDA behaviours whose ‘complex’ or ‘atypical’ presentation of autism does not fit neatly within existing classification systems and a ‘label-based’ service model. Improving education and understanding about familial experiences of E/PDA behaviours amongst professionals and services, with greater ‘personalisation’ and ‘formulation-based’ approaches is urgently needed to optimise outcomes and prevent harm.

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引用次数: 0

Virtual reality educational scenarios for students with ASD: Instruments validation and design of STEM programmatic contents ASD学生的虚拟现实教育场景：STEM编程内容的仪器验证和设计

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-29 DOI: 10.1016/j.rasd.2024.102521

Rui Manuel Silva , Paulo Martins , Tânia Rocha

Background

Virtual Reality (VR) is making education more engaging and accessible, especially for students with Autism Spectrum Disorders (ASD), promoting inclusion and the development of STEM skills in innovative ways. The literature still reveals a significant gap in terms of appropriate educational resources adapted to the specific needs of these students, resulting in difficulties in their inclusion. With the growing need for inclusive approaches in education, it is essential to find solutions to support these students. The aim of this study is to validate the data collection methodology that will enable the development of Virtual Learning Environments with STEM content for students with ASD.

Methods

The Design Science Research (DSR) methodology was used to develop a VR artefact for students with ASD. In addition, the Delphi method was applied in the expert involvement phase, which will contribute to the validation of the artefact's specific requirements. Both will allow for an inclusive and distinctive approach to the development of an artefact, with the aim of offering an innovative educational experience, meeting the varied needs and learning styles of students with ASD, optimising the effectiveness of the proposed VLE.

Results

The results show a strong acceptance among experts, highlighting the potential positive impact of this approach, although there are aspects to be improved to ensure a more comprehensive and effective approach.

Conclusions

This study highlights the successful validation of an innovative virtual reality programme for students with ASD, highlighting the importance of interdisciplinary collaboration and the strong contribution to the advancement of inclusive education.

虚拟现实（VR）正在使教育更具吸引力和可及性，特别是对于患有自闭症谱系障碍（ASD）的学生，以创新的方式促进包容和STEM技能的发展。文献仍然显示，在适应这些学生的具体需求的适当教育资源方面存在重大差距，导致他们融入的困难。随着对包容性教育方法的需求日益增长，找到支持这些学生的解决方案至关重要。本研究的目的是验证数据收集方法，该方法将为自闭症学生开发具有STEM内容的虚拟学习环境。方法采用设计科学研究（DSR）方法为ASD学生开发虚拟现实人工制品。此外，在专家参与阶段应用了德尔菲法，这将有助于验证人工制品的具体要求。这两种方法都将为人工制品的开发提供包容和独特的方法，旨在提供创新的教育体验，满足自闭症学生的不同需求和学习风格，优化建议的VLE的有效性。结果专家对该方法的认可程度较高，表明了该方法的潜在积极影响，但仍有一些方面有待改进，以确保该方法更加全面和有效。本研究强调了ASD学生创新虚拟现实项目的成功验证，强调了跨学科合作的重要性以及对推进全纳教育的巨大贡献。

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引用次数: 0

The BTBR T+ Itpr3tf/J mouse strain as a model to study the genetic, immune, and metabolic origins of neurodevelopmental disorders BTBR T+ Itpr3tf/J小鼠品系作为研究神经发育障碍的遗传、免疫和代谢起源的模型

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-29 DOI: 10.1016/j.rasd.2024.102526

MP Viscomi, J. Czyrska, D. Winiarczyk, MM Ziętek, S. Sampino

The BTBR T⁺ Itpr3^tf/J (BTBR) mouse strain manifests a peculiar behavioral phenotype that mirrors the core symptomatology of autism spectrum disorders, including alterations in social-communicative behavioral domains, and the presence of repetitive/stereotyped behaviors. Concurrent immune and metabolic imbalances characterize the BTBR phenotype and are exacerbated by specific gene mutations, resulting in severe multi-organs imbalances that recapitulate the symptoms of human autoimmune and metabolic disorders. The present review aims to retrace and summarize state-of-the-art regarding the genetic, immune, and metabolic features of the BTBR strain and address its potential use as a valid model to study the multi-system etiology and pathogenesis of neurodevelopmental disorders.

BTBR T+ Itpr3tf/J （BTBR）小鼠品系表现出一种特殊的行为表型，反映了自闭症谱系障碍的核心症状，包括社交行为领域的改变，以及重复/刻板行为的存在。同时存在的免疫和代谢失衡是BTBR表型的特征，并因特定的基因突变而加剧，导致严重的多器官失衡，再现了人类自身免疫和代谢紊乱的症状。本文旨在回顾和总结有关BTBR菌株的遗传、免疫和代谢特征的最新进展，并探讨其作为研究神经发育障碍多系统病因和发病机制的有效模型的潜力。

引用次数: 0

Brief report: Social relationships among autistic young adults with varying cognitive abilities 简要报告：不同认知能力的自闭症青年之间的社会关系

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-28 DOI: 10.1016/j.rasd.2024.102524

Dena Gohari, Jamie Park, Hillary Schiltz, Catherine Lord

Background

Autism is characterized by social difficulties, yet many autistic people value and desire social relationships. Given the limited research on autism in adulthood, particularly among those with lower cognitive ability, this study aimed 1) to compare self- vs informant-report of social relationships (acquaintances, friendships, and interpersonal difficulties) and 2) to compare social relationships, between more cognitively able (MCA) and less cognitively able (LCA) autistic young adults.

Method

Participants included 101 autistic young adults (M_age=25.90; SD=1.41; 82.0 % male; 79.8 % White) and their informants. Participants were interviewed, and the Interpersonal Difficulties and Social Relationships sections of the Social and Emotional Functioning Interview (SEF) were analyzed. Participants were classified as MCA (IQ≥70) or LCA (IQ<70).

Results

For the MCA sample, informant and self-report SEF scores were all positively correlated and did not have significantly different median values. Weaker and non-significant associations emerged for social contexts outside of the home (e.g., at work) and more abstract concepts (e.g., quality of relationships). Although cognitive ability impacted the extreme SEF scores (e.g., having self-initiated reciprocal friendships), many social difficulties were shared by LCA and MCA young adults, according to informant reports.

Conclusions

This study is one of few on social relationships and autism to focus on adulthood and include LCA young adults. Results indicate that informant-report provides useful information on more concrete aspects of social relationships in this population. Many autistic young adults, and LCA young adults in particular, may benefit from additional social supports, yet it is also essential to collaboratively consider what types of social experiences and relationships are desired and feasible for each person. More research and intervention tailored to LCA autistic young adults are needed.

自闭症的特点是社交困难，但许多自闭症患者重视和渴望社会关系。鉴于对成年自闭症的研究有限，特别是在认知能力较低的人群中，本研究的目的是1)比较自我报告和信息提供者报告的社会关系（熟人、友谊和人际关系困难），2)比较认知能力较强（MCA）和认知能力较差（LCA）的自闭症年轻人之间的社会关系。方法纳入101例自闭症青年(年龄=25.90；SD = 1.41;82.0 %男性;79.8% （白人）和他们的线人。对被试进行访谈，并对社会与情绪功能访谈（SEF）的人际困难和社会关系部分进行分析。参与者被分为MCA （IQ≥70）或LCA （IQ<70）。结果MCA样本中，自述者和自述者的SEF得分均呈正相关，中位数无显著差异。在家庭以外的社会环境（例如，在工作中）和更抽象的概念（例如，关系质量）中出现了较弱和不显著的关联。尽管认知能力影响了极端的SEF分数（例如，拥有自我发起的互惠友谊），但根据线人的报告，LCA和MCA的年轻人有许多共同的社交困难。结论本研究是为数不多的以成年期和LCA青年为研究对象的社会关系和自闭症的研究之一。结果表明，举报人报告提供了有关该人群社会关系更具体方面的有用信息。许多患有自闭症的年轻人，尤其是LCA的年轻人，可能会从额外的社会支持中受益，然而，协作考虑哪种类型的社会经验和关系对每个人来说都是理想和可行的，这也是至关重要的。需要更多针对LCA自闭症年轻人的研究和干预。

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引用次数: 0

Which emerging autism features at 12 months of age are associated with later parent-child interaction? 12 个月大时出现的哪些自闭症特征与日后的亲子互动有关？

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-28 DOI: 10.1016/j.rasd.2024.102525

Chengcheng Ke , Lesley-Anne Carter , Jonathan Green , Andrew J.O. Whitehouse , Kristelle Hudry , Josephine Barbaro , Cheryl Dissanayake , Murray Maybery , Slonims Vicky , Leonie Segal , Kandice Varcin , Ming Wai Wan

Background

Parent-child interactions (PCI) in infants with an elevated likelihood (EL) of autism start to diverge from other infants toward the end of the first year. This divergence is often attributed to emerging features of autism impacting infant social interactions in ways that become increasingly amplified. The aim was to identify which, if any, 12-month autism features were associated with later PCI qualities.

Method

Twelve-month-old infants (N = 103) with early autism features (3+ on the Social Attention and Communication Surveillance-Revised tool) were assessed on the Autism Observation Scale for Infants (AOSI) at 12 and 18 months, and on free play PCI using the Manchester Assessment of Caregiver-Infant Interaction at 18 months.

Results

AOSI autism features at 12-months were associated with 18-month PCI qualities, independent of 18-month autism features. Specifically, infants with emerging features in social attention areas later showed less attentiveness to parents and lower dyadic mutuality. By contrast, infants with emerging sensorimotor atypicality/delay later showed increased attentiveness to parents and lower negative affect, their parents were more sensitively responsive, and their interactions were more mutual. Emotional regulation scores had no significant association with later PCI.

Conclusions

The findings support the notion that PCI changes in EL infants are rooted in the transactional impact of early emerging autism-related features, which may have differential effects on PCI. Pending replication in a larger sample using a detailed measure of early autism features, the findings suggest that early autism features may amplify or elicit interactions.

背景自闭症可能性增高（EL）婴儿的亲子互动（PCI）在第一年末开始与其他婴儿出现分化。这种差异通常归因于新出现的自闭症特征对婴儿社交互动的影响越来越大。方法在12个月和18个月时使用婴儿自闭症观察量表（AOSI）对具有早期自闭症特征的12个月大婴儿（N = 103）进行评估（社会注意力和沟通监测工具修订版为3+），在18个月时使用曼彻斯特照顾者与婴儿互动评估对自由游戏PCI进行评估。结果 12 个月大时的 AOSI 自闭症特征与 18 个月大时的 PCI 特征相关，与 18 个月大时的自闭症特征无关。具体来说，在社会注意力领域出现新特征的婴儿后来对父母的关注度较低，二人互动的相互性也较低。相比之下，出现感知运动不典型/延迟的婴儿后来对父母的关注度提高，负面情绪降低，他们的父母对他们的反应更敏感，他们之间的互动更相互。结论：研究结果支持这样一种观点，即 EL 婴儿的 PCI 变化源于早期出现的自闭症相关特征的交易影响，这些特征可能会对 PCI 产生不同的影响。这些研究结果表明，早期自闭症特征可能会放大或激发互动，但这有待于使用早期自闭症特征的详细测量方法在更大样本中进行复制。

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引用次数: 0

Skill-based treatment for challenging behavior in autism spectrum disorder: A scoping review of treatment characteristics and outcomes 自闭症谱系障碍中挑战行为的技能治疗：治疗特征和结果的范围回顾

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-28 DOI: 10.1016/j.rasd.2024.102523

Kristin M. Hustyi , Jesse J. Logue , Scott S. Hall

Background

Behavioral interventions based on the principles of applied behavior analysis (ABA) are considered the gold standard approach for treating challenging behaviors commonly exhibited by children with autism spectrum disorder (ASD). However, questions have arisen concerning the safety of implementing traditional ABA procedures for the treatment of challenging behavior in natural settings. Over the past decade, a treatment package known as skill-based treatment (SBT) has emerged that may allow challenging behaviors in this population to be addressed in a safe, efficient, and effective manner.

Methods

We reviewed and summarized studies utilizing SBT published in English between 2014 and September 2023 using PsychINFO and PubMed databases. Two independent reviewers screened citations for inclusion. Data abstraction was performed by one reviewer and verified by a second reviewer.

Results

Twenty-one studies (3 consecutive controlled case series and 18 utilizing single-case experimental designs) met the inclusion criteria describing SBT conducted with 87 individuals. The majority of individuals treated with SBT were autistic children with language levels varying from non-vocal to fully fluent. Treatments were implemented in a variety of settings at least 1–2 times per week, with treatment requiring a range of 4 - 48.5 h of clinician time. Rates of challenging behavior were reported to decrease by 98.2 % (range: 90–100 %) on average. Treatments were implemented via telehealth for 8 individuals (9.2%). Data concerning treatment maintenance was reported for just 7 individuals (8.1 %).

Conclusions

SBT is a potentially effective treatment procedure for challenging behavior that can be conducted in a variety of settings including the child’s home, school, and via telehealth. However, future research is needed to understand the long-term effectiveness of SBT. Randomized controlled trials of SBT are also necessary in order to study the safety and efficacy of this treatment approach.

基于应用行为分析（ABA）原则的行为干预被认为是治疗自闭症谱系障碍（ASD）儿童常见的挑战性行为的金标准方法。然而，关于在自然环境中实施传统ABA程序治疗挑战性行为的安全性问题已经出现。在过去的十年里，一种被称为基于技能的治疗（SBT）的治疗方案已经出现，它可以让这一人群中的挑战性行为以一种安全、高效和有效的方式得到解决。方法回顾和总结2014年至2023年9月在PsychINFO和PubMed数据库中发表的英文SBT研究。两名独立审稿人筛选了纳入的引文。数据抽象由一名审阅者执行，并由另一名审阅者进行验证。结果有21项研究（3个连续对照病例系列，18个采用单病例实验设计）符合SBT的纳入标准，共涉及87例个体。大多数接受SBT治疗的人都是自闭症儿童，他们的语言水平从无声到完全流利不等。治疗在不同的环境中实施，每周至少1-2次，治疗需要4 - 48.5 h的临床时间。据报道，挑战行为的比率平均下降了98.2% %（范围：90-100 %）。通过远程医疗对8人（9.2%）实施治疗。有关治疗维持的数据仅报告了7人（8.1 %）。结论ssbt是一种潜在有效的治疗挑战性行为的方法，可以在各种环境中进行，包括儿童的家庭、学校和远程医疗。然而，需要进一步的研究来了解SBT的长期有效性。为了研究这种治疗方法的安全性和有效性，SBT的随机对照试验也是必要的。

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引用次数: 0

Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study 自闭症成人的补充社会保障收入和法定监护的家庭经验：混合方法研究

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-27 DOI: 10.1016/j.rasd.2024.102522

Emily F. Ferguson , Elaine B. Clarke , Noa Schisterman , Catherine Lord

Background

Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults.

Methods

We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach.

Results

There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance.

Conclusions

These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood.

背景在针对自闭症成人的服务研究中，家庭与社会保障补充收入（SSI）计划的互动以及寻求法定监护的决定鲜为人知。方法我们开展了一项混合方法研究，将现有纵向队列中 122 名自闭症成人的定量调查数据与对 12 名自闭症成人和/或法定监护人的定性访谈相结合。我们探讨了与 25 岁时拥有 SSI 和法定监护人的可能性相关的社会人口、发育和行为特征。我们对访谈内容进行了逐字记录，并采用快速定性分析方法对访谈内容进行了分析。结果根据智商（IQ）分数、适应行为和自闭症特征，家庭能否获得社会福利金和监护权存在定量差异，但种族、民族或母亲教育程度没有差异。定性数据分析揭示了六个主题，这些主题强调了与获得和维持 SSI 相关的挑战，以及与法律监护相关的复杂而微妙的决定。这些发现为自闭症成人争取社会福利金和法律监护权的相关经验提供了新的视角，包括这些程序中的相似之处和主要差异。研究结果还为今后的研究提供了建议，以改善整个成年期家庭的协调和支持。

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引用次数: 0

Commentary on: Towards a neurodiversity-affirmative conceptualisation of psycho-education in the context of autism 评论在自闭症的背景下，实现神经多样性心理教育概念化

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-22 DOI: 10.1016/j.rasd.2024.102517

Daniel Shepherd

引用次数: 0

Child sleep onset latency mediates parental depression and noncompliance in autistic children 儿童睡眠开始潜伏期对父母抑郁和自闭症儿童不遵从行为有中介作用

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-21 DOI: 10.1016/j.rasd.2024.102518

Melanie A. Stearns , Braden Hayse , Neetu Nair , Micah Mazurek , Ashley F. Curtis , David Beversdorf , Kristin Sohl , Julie Muckerman , Christina S. McCrae

Background

Parents diagnosed with depression often report that their children have difficulty following rules and falling asleep. Parents with depression are less likely to be consistent or enforce bedtimes, resulting in the child having fewer bedtime rules and getting less sleep. Over time this may mean the child develops poor sleep habits and difficulty falling asleep. Although these relationships have yet to be studied in children diagnosed with Autism Spectrum Disorder (ASD), it is an important area given that approximately 80 % of autistic children have sleep difficulties.

Methods

The current study examined whether parent-reported child sleep onset latency (SOL) mediated the relationship between parental depression and child noncompliance. The sample (N=34) consisted of parents (82 % female) reporting on their children aged 6–12 (M=8.63, SD = 2.00; 76.5 % male). All children were diagnosed with ASD and had parent-reported sleep complaints. Measures included the Child Sleep Health Questionnaire (CSHQ), the Pediatric Symptom Checklist (PSC), and a question asking if the parent had been diagnosed with depression (yes/no).

Results

Greater parent-reported child SOL significantly mediated the relation between increased parental depression and greater noncompliance.

Conclusions

These results suggest that difficulty falling asleep may help to explain why children of parents who have depression are noncompliant.

背景被诊断出患有抑郁症的父母常常表示，他们的孩子在遵守规则和入睡方面有困难。患有抑郁症的父母不太可能始终如一或强制孩子遵守就寝时间，从而导致孩子的就寝时间规则减少，睡眠时间缩短。随着时间的推移，这可能意味着孩子会养成不良的睡眠习惯，难以入睡。尽管这些关系尚未在被诊断患有自闭症谱系障碍（ASD）的儿童中进行研究，但鉴于大约 80% 的自闭症儿童有睡眠困难，因此这是一个重要的领域。方法目前的研究考察了父母报告的儿童睡眠开始潜伏期（SOL）是否会介导父母抑郁与儿童不遵守规定之间的关系。样本（N=34）由家长（82% 为女性）报告其 6-12 岁子女的情况组成（M=8.63，SD=2.00；76.5% 为男性）。所有儿童均被诊断患有 ASD，并由家长报告睡眠问题。测量方法包括儿童睡眠健康问卷（CSHQ）、儿科症状检查表（PSC）以及询问父母是否被诊断患有抑郁症的问题（是/否）。结果父母报告的儿童SOL越多，就越能显著地调节父母抑郁程度增加与儿童不遵从治疗之间的关系。

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引用次数: 0

Correlates of age at first alcohol use among a US-based sample of autistic underage youth 美国自闭症未成年青少年样本中首次饮酒年龄的相关因素

IF 2.2 4区医学 Q1 EDUCATION, SPECIAL

Research in Autism Spectrum Disorders

Pub Date : 2024-11-21 DOI: 10.1016/j.rasd.2024.102520

Calliope Holingue , Laura Graham Holmes , Julia Cusano , Emily F. Rothman

Background

Recent research has identified risk factors for hazardous alcohol use among autistic individuals, but correlates of age at first alcohol use are unclear.

Methods

This study analyzed 49 U.S.-based autistic youth (ages 16–20) who had ever consumed alcohol. Participants were categorized as being less than 16 years old (n=28) or 16 years or older (n=21) at first alcohol use. The analysis aimed to descriptively compare youth with younger versus older age at first alcohol use.

Results

Younger age at first alcohol use was associated with hazardous alcohol use, higher levels of anxiety, and lower masking of autistic traits

Conclusions

These findings demonstrate that autistic youth are at risk for underage alcohol use. More research is needed on alcohol and substance use in this population to develop tailored prevention and intervention programs.

背景最近的研究发现了自闭症患者危险饮酒的风险因素，但首次饮酒年龄的相关性尚不清楚。方法本研究分析了 49 名曾饮酒的美国自闭症青少年（16-20 岁）。参与者首次饮酒时的年龄被分为小于 16 岁（28 人）或 16 岁或以上（21 人）。分析旨在对首次饮酒年龄较小和年龄较大的青少年进行描述性比较。结果首次饮酒年龄较小与危险饮酒、焦虑水平较高和自闭症特征掩蔽程度较低有关。需要对这一人群中的酒精和药物使用情况进行更多研究，以制定有针对性的预防和干预计划。

引用次数: 0