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Material hardship and sources of support for autistic adolescents and their families. 自闭症青少年及其家庭的物质困难和支助来源。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-20 DOI: 10.1177/13623613241304503
Kristy A Anderson, Melissa Radey, Lauren Bishop, Nahime G Aguirre Mtanous, Jamie Koenig, Lindsay Shea

Lay abstract: Our study looks at how families with autistic teenagers manage financially compared with families with teenagers who do not have autism. We know that money matters are a big part of life's overall quality and that autistic individuals and their families often face more financial challenges. These challenges can affect their health, social connections, and access to needed services. What our research adds is a closer look at these financial difficulties by considering not just how much money a family has but also what they own, their struggles to meet basic needs, and the help they get from both government programs and their own social circles. We found that families with autistic teenagers often deal with more financial problems, including not having enough food, even though they might be using available support programs. This is important because it shows us that the current ways of helping may not be enough. Our findings suggest we need to think more broadly about how to support these families. This could mean making policies that better address their unique needs or coming up with new ways to help them that go beyond just looking at income. Understanding these challenges better can help us make life better for autistic individuals and their families.

摘要:我们的研究着眼于有自闭症青少年的家庭与没有自闭症青少年的家庭如何管理经济。我们知道,金钱是生活质量的重要组成部分,自闭症患者和他们的家庭经常面临更多的经济挑战。这些挑战会影响他们的健康、社会关系和获得所需服务的机会。我们的研究不仅考虑了一个家庭有多少钱,还考虑了他们拥有的东西,他们为满足基本需求所做的努力,以及他们从政府项目和自己的社交圈得到的帮助,从而更仔细地审视了这些经济困难。我们发现,有自闭症青少年的家庭往往面临更多的经济问题,包括没有足够的食物,尽管他们可能正在使用现有的支持项目。这很重要,因为它告诉我们,目前的帮助方式可能还不够。我们的研究结果表明,我们需要更广泛地思考如何支持这些家庭。这可能意味着制定更好地满足他们独特需求的政策,或者提出新的方法来帮助他们,而不仅仅是看收入。更好地理解这些挑战可以帮助我们改善自闭症患者及其家庭的生活。
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引用次数: 0
Suitability of the DSM-5 social anxiety disorder severity scale for autistic adults. DSM-5孤独症成人社交焦虑障碍严重程度量表的适用性。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-19 DOI: 10.1177/13623613241290547
Simon G Brett, Jacquiline E den Houting, Melissa H Black, Lauren P Lawson, Julian Trollor, Samuel Rc Arnold

Lay abstract: Mental health measures used with autistic adults are often only evaluated for use with non-autistic adults, which may cause inaccurate measurement. This is important when measuring social anxiety disorder as some features overlap with social characteristics of autism. This study evaluated one self-report questionnaire measure of social anxiety disorder, the Severity Measure for Social Anxiety Disorder. The Severity Measure for Social Anxiety Disorder is based upon criteria for diagnosis of social anxiety disorder, and we aimed to understand its suitability for autistic adults. The Severity Measure for Social Anxiety Disorder was completed by 284 autistic adults and 80 non-autistic adults who were then asked five follow-up questions about ambiguous questions on the Severity Measure for Social Anxiety Disorder. We found that over half our sample of autistic adults, on at least one question, attributed their answer to something other than anxiety. Furthermore, in autistic adults, one underlying construct of social anxiety did not link their answers on the Severity Measure for Social Anxiety Disorder together, suggesting the Severity Measure for Social Anxiety Disorder might not be suited to capturing social anxiety disorder in autistic adults. To improve measurement, we rescored answers where participants said their response was due to something other than social anxiety, however, the rescored Severity Measure for Social Anxiety Disorder did not only capture social anxiety in autistic adults either. Finally, we analysed the reasons other than social anxiety autistic adults said influenced their answers. We grouped their responses into 10 categories, for example, 'fatigue', 'sensory overwhelm', and 'masking'. Overall, our findings suggest caution when using the Severity Measure for Social Anxiety Disorder with autistic adults, and the categories identified may suggest how to measure social anxiety more accurately in autistic adults.

摘要:用于自闭症成人的心理健康测量通常只用于非自闭症成人,这可能导致测量不准确。这在测量社交焦虑障碍时很重要,因为一些特征与自闭症的社交特征重叠。本研究评估了社交焦虑障碍的自我报告问卷——社交焦虑障碍严重程度量表。社交焦虑障碍的严重程度测量是基于社交焦虑障碍的诊断标准,我们的目的是了解它对自闭症成年人的适用性。284名自闭症成年人和80名非自闭症成年人完成了《社交焦虑障碍严重程度量表》,他们随后被问及5个关于社交焦虑障碍严重程度量表中模棱两可的问题。我们发现,超过一半的自闭症成年人样本,在至少一个问题上,将他们的答案归因于焦虑以外的原因。此外,在自闭症成人中,一个潜在的社交焦虑结构没有将他们在社交焦虑障碍严重程度量表上的答案联系在一起,这表明社交焦虑障碍严重程度量表可能不适合捕捉自闭症成人的社交焦虑障碍。为了改进测量,我们重新记录了参与者说他们的反应是由于社交焦虑以外的原因引起的答案,然而,重新记录的社交焦虑障碍严重程度测量不仅记录了自闭症成年人的社交焦虑。最后,我们分析了孤独症成年人说的影响他们回答的除社交焦虑以外的原因。我们将他们的反应分为10类,例如“疲劳”、“感官压力”和“掩饰”。总的来说,我们的研究结果表明,在对自闭症成年人使用社交焦虑障碍严重程度测量时要谨慎,并且确定的类别可能会建议如何更准确地测量自闭症成年人的社交焦虑。
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引用次数: 0
Mental health care use of autistic adults: Identifying longitudinal patterns using sequence analysis. 自闭症成人使用心理保健的情况:利用序列分析确定纵向模式。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-18 DOI: 10.1177/13623613241304513
Iris Selten, Tim Ziermans, Iris Rapoport, Kim Jonkman, Hilde M Geurts

Lay abstract: Many autistic adults experience co-occurring mental health problems, which have a negative effect on their well-being and result in increased use of mental health services. To improve mental healthcare for autistic adults, a better understanding is needed of what type of support they use in real life. Clinical guidelines recommend three kinds of mental health interventions: therapy, counseling, and medication. We investigated the use of these types of interventions in a sample of 445 autistic adults (aged 18-87 years) across a 5-to-7-year period. We found evidence for four different patterns of intervention use, or so-called subgroups: (1) least intervention use, (2) mostly counseling, (3) mostly medication, and (4) mixed intervention use. The group with mixed intervention use consisted of relatively more females and individuals with co-occurring psychiatric conditions, especially compared to the subgroup with the least intervention use. It appeared that many, but not all, autistic individuals used mental health services for an extended period. However, there was considerable variability in the type, combination, and duration of intervention use. This means that determining the optimal support for autistic adults is often a complex task, which requires collaboration of clinical experts and autistic individuals themselves, to make informed decisions.

摘要:许多自闭症成年人同时经历心理健康问题,这对他们的健康产生了负面影响,导致他们更多地使用心理健康服务。为了改善自闭症成年人的心理保健,需要更好地了解他们在现实生活中使用的支持类型。临床指南推荐三种心理健康干预措施:治疗、咨询和药物治疗。我们调查了445名自闭症成年人(18-87岁)在5- 7年期间使用这些类型的干预措施的情况。我们发现了四种不同的干预使用模式的证据,或所谓的亚组:(1)最少干预使用,(2)主要咨询,(3)主要药物治疗,(4)混合干预使用。混合干预组由相对较多的女性和同时出现精神疾病的个体组成,特别是与最少干预使用的亚组相比。似乎很多(但不是全部)自闭症患者长期使用心理健康服务。然而,在干预使用的类型、组合和持续时间方面存在相当大的差异。这意味着确定对自闭症成年人的最佳支持通常是一项复杂的任务,需要临床专家和自闭症患者自己的合作,才能做出明智的决定。
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引用次数: 0
A systematic review of ecological momentary assessment in autism research. 孤独症研究中生态瞬时评价的系统综述。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-18 DOI: 10.1177/13623613241305722
Yixin Chen, Zhenyang Xi, Talya Greene, Will Mandy

Lay abstract: Ecological momentary assessments assess people's in-the-moment thoughts and behaviours in their daily lives in natural environments. The number of ecological momentary assessment studies with autistic people has increased over the last decade. For the first time, this review (1) summarises how well ecological momentary assessment works for allowing autistic people to describe and express their thoughts, emotions and experiences, and (2) provides suggestions for the design of ecological momentary assessment to make this research method more accessible to future autistic participants. In total, we synthesised participation experiences from 930 autistic people. Overall, ecological momentary assessment is generally acceptable for autistic adults aged from 18 to 60 and with average or above-average intelligence and language. We also identified several issues in the ecological momentary assessment procedure and suggested researchers consider these when designing future ecological momentary assessment studies with autistic people. The findings of this review provide evidence that ecological momentary assessment can be used to investigate many different questions with autistic people and suggest a wider application of ecological momentary assessment in future studies with autistic people.

摘要:生态瞬时评价评价人们在自然环境中日常生活中的瞬时思想和行为。在过去十年中,针对自闭症患者的生态瞬时评估研究的数量有所增加。本综述首次(1)总结了生态瞬间评估在帮助自闭症患者描述和表达他们的思想、情感和经历方面的效果;(2)对生态瞬间评估的设计提出了建议,使该研究方法更容易为未来的自闭症参与者所接受。总的来说,我们综合了930名自闭症患者的参与经历。总体而言,对于年龄在18岁至60岁之间、智力和语言水平平均或高于平均水平的自闭症成年人,生态瞬时评估通常是可以接受的。我们还发现了生态瞬时评估过程中的几个问题,并建议研究人员在设计未来的自闭症患者生态瞬时评估研究时考虑这些问题。本综述的研究结果表明,生态瞬时评价可以用于研究自闭症患者的许多不同问题,并建议在未来的自闭症患者研究中更广泛地应用生态瞬时评价。
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引用次数: 0
Policing Black autistic children: A qualitative approach to understanding Black caregivers' concerns. 治安黑人自闭症儿童:一个定性的方法来理解黑人照顾者的关注。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-16 DOI: 10.1177/13623613241303549
Ashlee Yates Flanagan, Meredith Cola, Naomi Yu, Haley Peele, Keeana Dicette, Grace Hicks, Maggie Rose Pelella, Ayana King-Pointer, Jamiel Owens, Dieu M Truong, Aili Hauptmann, Juan Pacheco, Alison Russell, Amanda Lee, Sarah Schillinger, Maxine Covello, Meg Lyons, Rita Solórzano, Sinan Turnacioglu, Vijay Ravindran, Joseph P McCleery, Judith S Miller, Julia Parish-Morris

Lay abstract: In the United States, Black autistic youth face elevated risk of negative outcomes during police interactions. Although the outcomes of these interactions are well-documented, less is known about Black autistic youths' experiences during police encounters, as the current literature has largely examined the experiences of autistic adults, mostly White American samples, and/or autistic youth abroad. This study utilizes qualitative methods to examine the perceptions and concerns of 43 Black caregivers (N = 43; 98% parents; 2% legal guardians; 93% mothers) of Black autistic children (mean age: 16.5; 79% male) regarding police interactions with their autistic children. Through phenomenological analysis, four dominant themes emerged: concerns regarding the Quality of police officers' training, children's Autistic behaviors being inappropriately policed, the explicit Threat of harm and murder, and the hope for Mindful Policing. These findings demonstrate that caregivers' perceptions of police behavior are inextricably linked to their concerns about the quality of police officers' training. This study highlights (1) the importance of including racially and ethnically diverse individuals in research exploring autistic individuals' police interactions, (2) the need for culturally responsive and neuro-affirming adaptations to existing policing interventions designed for autistic people, and (3) the urgency of integrating Black caregivers' concerns into law enforcement training efforts.

Lay 摘要:在美国,黑人自闭症青少年在与警察的互动中面临更高的负面风险。尽管这些互动的结果已被充分记录,但对黑人自闭症青少年在遭遇警察时的经历却知之甚少,因为目前的文献主要研究的是自闭症成年人、大多数美国白人样本和/或国外自闭症青少年的经历。本研究采用定性方法,考察了 43 名黑人自闭症儿童(平均年龄:16.5 岁;79% 为男性)的照顾者(N = 43;98% 为父母;2% 为法定监护人;93% 为母亲)对警察与自闭症儿童互动的看法和担忧。通过现象学分析,我们发现了四个主要的主题:对警察培训质量的担忧、儿童自闭症行为受到不恰当的警察管理、明确的伤害和谋杀威胁,以及对 "用心警务 "的希望。这些发现表明,照料者对警察行为的看法与他们对警察培训质量的担忧密不可分。本研究强调了:(1)将不同种族和民族的个人纳入自闭症患者与警察互动的研究中的重要性;(2)对现有的针对自闭症患者的警务干预措施进行文化响应和神经肯定调整的必要性;以及(3)将黑人照护者的担忧纳入执法培训工作的紧迫性。
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引用次数: 0
Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study. 自闭症青少年和年轻人的医疗保健转型:一项试点农村和城市比较调查研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-14 DOI: 10.1177/13623613241304495
E Zhang, Makenna Snyder, Wafaa Alduraidi, Ezra Kaiser, Spencer Hunley, Lacy Wright, Rebecca Swinburne Romine, Eve-Lynn Nelson, Nancy Cheak-Zamora

Lay abstract: Autistic adolescents and young adults in rural areas face significant challenges in health care transition compared to their urban counterparts. Health care transition, the process of moving from pediatric to adult health care, is crucial for the long-term health outcomes of adolescents and young adults. Previous research indicates rural adolescents and young adults often have greater unmet medical and financial needs, affecting their transition experiences, but there was no study focusing on rural autistic adolescents and young adults' health care transition experiences. This pilot study provides a comparative analysis of the health care transition experiences of rural and urban autistic adolescents and young adults. Ninety-six urban and 84 rural participants (14-25 years old) participated in the study. Their average age was 19.67 years. Just over half of the participants had completed the transition to adult care, typically reporting finishing this process at around 18 years old. A majority had limited discussions with their doctors about transitioning, and those who had discussions often started these conversations late. It also reveals that the responses completed by or with parents of autistic adolescents and young adults tend to indicate that the adolescents and young adults would not make future medical decisions or are uncertain about it. The findings underscore the necessity for targeted support for autistic adolescents and young adults during their health care transition process, regardless of their residence. There is a clear need for targeted health care transition interventions for adolescents and young adults, parents, and health care providers to ensure autistic adolescents and young adults and their families receive adequate support during the health care transition process.

摘要:与城市自闭症青少年相比,农村自闭症青少年在医疗保健转型中面临着重大挑战。保健过渡,即从儿科保健向成人保健过渡的过程,对青少年和年轻人的长期健康结果至关重要。以往的研究表明,农村青少年和青壮年往往有较大的未满足的医疗和经济需求,影响了他们的过渡体验,但尚未有研究关注农村自闭症青少年和青壮年的卫生保健过渡体验。本初步研究对农村和城市自闭症青少年和青壮年的医疗保健转型经验进行了比较分析。96名城市参与者和84名农村参与者(14-25岁)参加了这项研究。他们的平均年龄为19.67岁。超过一半的参与者完成了向成人护理的过渡,通常报告在18岁左右完成了这一过程。大多数人与医生就变性问题进行了有限的讨论,而那些进行了讨论的人往往开始得很晚。研究还表明,自闭症青少年和年轻人的父母或与父母一起完成的回答往往表明,青少年和年轻人不会做出未来的医疗决定或对此不确定。研究结果强调,在自闭症青少年和年轻人的医疗保健过渡过程中,无论他们居住在哪里,都有必要提供有针对性的支持。显然需要针对青少年和年轻人、父母和卫生保健提供者的有针对性的卫生保健过渡干预措施,以确保自闭症青少年和年轻人及其家庭在卫生保健过渡过程中得到充分的支持。
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引用次数: 0
Short report on a distinct electroencephalogram endophenotype for MTHFR gene variation co-occurring in autism spectrum disorder. 关于自闭症谱系障碍中并发 MTHFR 基因变异的独特脑电图内表型的简短报告。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-14 DOI: 10.1177/13623613241305721
Uchenna Ezedinma, Evan Jones, Alexander Ring, Spencer Miller, Andrew Ladhams, Shauna Fjaagesund, Terri Downer, Gary Campbell, Florin Oprescu

Lay abstract: Methylenetetrahydrofolate reductase mutations refer to genetic variations in the methylenetetrahydrofolate reductase enzyme, which plays an important role in folate metabolism. Folate is essential for neural development and signalling. Children with autism spectrum disorder have atypical neural signals compared with control. This study used a non-invasive method to identify a distinct neural signal that may be useful in future screening for methylenetetrahydrofolate reductase mutation in children with autism spectrum disorder. Given that the underlying causes of autism spectrum disorder have multiple genetic factors and often require subjective assessment, this study introduces a potential non-invasive screening method for methylenetetrahydrofolate reductase gene mutation. This method could provide valuable biomarkers for screening and personalised treatments, offering hope for improved risk stratification and bespoke nutritional support and supplements to mitigate the impact on affected individuals and their descendants.

Lay 摘要:亚甲基四氢叶酸还原酶突变是指亚甲基四氢叶酸还原酶的基因变异,该酶在叶酸代谢中发挥着重要作用。叶酸对神经发育和信号传导至关重要。与对照组相比,自闭症谱系障碍儿童的神经信号不典型。本研究采用非侵入性方法确定了一种独特的神经信号,该信号可能有助于今后筛查自闭症谱系障碍儿童的亚甲基四氢叶酸还原酶突变。鉴于自闭症谱系障碍的根本原因有多种遗传因素,而且往往需要主观评估,本研究介绍了一种潜在的非侵入性亚甲基四氢叶酸还原酶基因突变筛查方法。这种方法可以为筛查和个性化治疗提供有价值的生物标志物,为改善风险分层、定制营养支持和补充剂以减轻对受影响个体及其后代的影响带来希望。
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引用次数: 0
Secondary effects of dialectical behaviour therapy on social functioning, quality of life, and autism traits in autistic adults with suicidality. 辩证行为疗法对有自杀倾向的成年自闭症患者的社会功能、生活质量和自闭症特征的次要影响。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-14 DOI: 10.1177/13623613241302875
Anne Huntjens, Lmc Wies van den Bosch, Bram Sizoo, Ad Kerkhof, Filip Smit, Mark van der Gaag

Lay abstract: Dialectical behaviour therapy is a comprehensive treatment that helps individuals improve distress tolerance, mindfulness, interpersonal effectiveness and emotion regulation. It is commonly used to assist those experiencing self-harm and suicidal thoughts or behaviours. Despite its broad application, our understanding of how dialectical behaviour therapy impacts autistic individuals with suicidal behaviour remains limited. This study compared dialectical behaviour therapy with treatment as usual in 123 autistic adults experiencing suicidal behaviours. Participants were recruited from six mental health centres, with 63 receiving dialectical behaviour therapy and 60 receiving treatment as usual. The study assessed outcomes such as social functioning, quality of life and specific autism traits over 12 months. Findings revealed that dialectical behaviour therapy led to significant improvements in social functioning and quality of life compared to treatment as usual, though there were no effects on autism traits. These improvements suggest that dialectical behaviour therapy holds promise as an effective treatment for autistic individuals grappling with suicidal behaviour. The findings strongly support the broader implementation of dialectical behaviour therapy in mental health centres, especially given the limited treatment options available for autistic individuals with suicidal tendencies.

摘要:辩证行为疗法是一种帮助个体提高痛苦耐受性、正念、人际有效性和情绪调节能力的综合疗法。它通常用于帮助那些经历自我伤害和自杀想法或行为的人。尽管应用广泛,但我们对辩证行为疗法如何影响自杀行为的自闭症患者的理解仍然有限。本研究比较了123名有自杀行为的自闭症成人的辩证行为治疗与常规治疗。参与者从六个心理健康中心招募,其中63人接受辩证行为疗法,60人接受常规治疗。该研究在12个月内评估了社会功能、生活质量和特定自闭症特征等结果。研究结果显示,与常规治疗相比,辩证行为疗法在社会功能和生活质量方面有显著改善,尽管对自闭症特征没有影响。这些改进表明,辩证行为疗法有望有效治疗患有自杀行为的自闭症患者。研究结果强烈支持在心理健康中心更广泛地实施辩证行为疗法,特别是考虑到有自杀倾向的自闭症患者的治疗选择有限。
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引用次数: 0
Gender and family-role portrayals of autism in British newspapers: An intersectional corpus-based study. 英国报纸上自闭症的性别和家庭角色描述:一项基于交叉语料库的研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-11 DOI: 10.1177/13623613241303547
Themis Karaminis, Costas Gabrielatos, Ursula Maden-Weinberger, Geoffrey Beattie

A recent large-scale study on the portrayal of autism in British newspapers revealed a deficit-based coverage, which concentrated on children and boys in particular, typically represented from the mothers' perspective. This follow-up study refines these representations, considering how they differ by gender and family role. We analysed 2998 text samples, which discussed autism in the context of four combinations of gender and family roles, namely, BOY, GIRL, FATHER and MOTHER. These samples included sources with different publication dates, reporting style and political orientation. Autism representations remained negative regardless of gender and family role. Over time, stories about autistic girls started to emerge, identifying them as a distinct group explicitly compared to autistic boys. Newspapers, especially broadsheets, associated girls with diagnostic difficulties, camouflaging and sometimes gender dysphoria - discussed particularly for those assigned female at birth. The child's autism was more often attributed to maternal than paternal behaviours or lifestyle. Autistic mothers were mentioned more often than fathers and were portrayed negatively. We conclude that newspapers portray female autism as less significant than male autism and, in addition, place mothers under more ethical scrutiny than fathers. These disparities reflect both historical biases in autism research and gender and family-role stereotypes.

最近一项针对英国报纸上自闭症描述的大规模研究揭示了一种基于缺陷的报道,这种报道尤其集中在儿童和男孩身上,通常是从母亲的角度来表现的。这项后续研究细化了这些表征,考虑到它们如何因性别和家庭角色而不同。我们分析了2998个文本样本,这些文本样本在四种性别和家庭角色组合的背景下讨论了自闭症,即男孩、女孩、父亲和母亲。这些样本包括不同出版日期、报道风格和政治倾向的来源。无论性别和家庭角色如何,自闭症表征仍然是消极的。随着时间的推移,关于自闭症女孩的故事开始出现,与自闭症男孩相比,她们被明确地视为一个独特的群体。报纸,特别是大报,将女孩与诊断困难、伪装和有时性别不安联系在一起——特别是对那些出生时被指定为女性的人。孩子的自闭症更多地归因于母亲而不是父亲的行为或生活方式。与父亲相比,自闭症母亲被提及的频率更高,而且被描绘成负面形象。我们得出的结论是,报纸将女性自闭症描绘得没有男性自闭症那么重要,此外,将母亲置于比父亲更多的道德审查之下。这些差异既反映了自闭症研究的历史偏见,也反映了性别和家庭角色的刻板印象。
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引用次数: 0
Adapting an early autism caregiver coaching intervention for telehealth delivery in low-resource settings: A South African study of the 'what' and the 'why'. 在资源匮乏的环境下,将早期自闭症护理人员指导干预措施用于远程医疗服务:一项关于“什么”和“为什么”的南非研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-12-10 DOI: 10.1177/13623613241300774
Marisa Viljoen, Noleen Seris, Nokuthula Shabalala, Minkateko Ndlovu, Petrus J de Vries, Lauren Franz

Lay abstract: We were busy with an early autism caregiver-coaching programme in South Africa, when COVID-19 stopped all in-person work. We changed the programme so it could be done using computers and/or phones. Here, we describe programme changes (which we call the 'what') and the reasons for those changes (which we call the 'why'). We used a tool called the Framework for Modification and Adaptations (FRAME) to describe the 'what', and the Exploration, Preparation, Implementation, Sustainment (EPIS) framework to describe the 'why' of our programme changes. The team members who helped make these changes checked that the changes described were correct. We made 10 changes in total: we used WhatsApp to deliver the programme, made simple pictures with words as visual tools for the programme, changed some session activities, changed a self-reflection checklist, provided all activities online, changed the way assessment and consent was done, made a session recording guide, sent things needed for sessions by email and WhatsApp, and made a caregiver-child play recording guide. The reasons for changes (the 'why') were about factors outside schools (the types of phones and data people had, WhatsApp security rules, COVID-19 rules), things inside schools/workplace (about the caregivers and nonspecialists themselves, ethics boards, things about the school itself), and support from people who developed the programme. Changes were made by working with things inside schools/workplace that could change. Identifying what could change helped focus and guide which changes were made to a programme.

摘要:我们当时正忙于在南非开展一个早期自闭症护理人员培训项目,突然COVID-19中断了所有面对面的工作。我们改变了程序,这样就可以用电脑和/或电话来完成了。在这里,我们描述程序的变化(我们称之为“什么”)和这些变化的原因(我们称之为“为什么”)。我们使用了一个名为“修改和适应框架”(FRAME)的工具来描述“是什么”,并使用了“探索、准备、实施、维持”(EPIS)框架来描述我们项目变更的“原因”。帮助进行这些更改的团队成员检查所描述的更改是否正确。我们一共做了10个改动:我们使用WhatsApp来传递课程,制作简单的文字图片作为课程的视觉工具,改变了一些会议活动,改变了一个自我反思清单,提供了所有的在线活动,改变了评估和同意的方式,制作了一个会议记录指南,通过邮件和WhatsApp发送了会议所需的东西,制作了一个照顾者-孩子的游戏记录指南。改变的原因(“为什么”)与校外因素有关(人们拥有的手机和数据类型,WhatsApp安全规则,COVID-19规则),学校/工作场所内部的事情(关于护理人员和非专业人员本身,道德委员会,学校本身的事情),以及开发人员的支持。改变是通过处理学校/工作场所可能发生的变化而产生的。确定什么可以改变有助于集中和指导对方案进行哪些改变。
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引用次数: 0
期刊
Autism
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