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'I'm sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children. 我厌倦了成为问题":自闭症母亲为其自闭症子女与学校互动的经历。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-24 DOI: 10.1177/13623613241297223
Aspasia Stacey Rabba, Jodie Smith, Gabrielle Hall, Vanessa Alexander, Kate Batty, Poulomee Datta, Emma Goodall, Melanie Heyworth, Siobhan Lamb, Wenn Lawson, Rozanna Lilley, Katy Reid, Najeeba Syeda, Elizabeth Pellicano

Lay abstract: Good relationships between families and schools make a difference to children's learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children's mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.

内容提要:家庭与学校之间的良好关系对儿童的学习大有裨益,自闭症儿童也是如此。但是,自闭症儿童的父母往往发现,与教师和学校工作人员互动时压力很大。在这项研究中,我们的重点是自闭症儿童的家长。我们希望了解他们与学校互动的经历,以及这些经历对他们及其子女的影响。我们采访了 31 位自闭症儿童的母亲,了解她们的经历。她们告诉我们,为了让自闭症儿童获得所需的支持,她们经常与学校发生争执,并将此比作 "战场"。他们'厌倦了被[视为]问题',觉得他们的观点和自闭症专业知识没有得到教师和学校的重视。这不仅损害了自闭症儿童的心理健康,也损害了她们自己的心理健康。自闭症母亲也分享了一些积极的经验。她们谈到了相互尊重的价值及其对成功的学校伙伴关系的影响。自闭症母亲还谈到了为自己和孩子挺身而出,以及这种倡导和自我主张如何帮助她们与学校建立更好的关系。这项研究表明,自闭症家庭与教师和学校互动是多么困难,这对整个家庭都会产生影响。它还告诉我们,当自闭症家长感到安全,当他们的知识和生活经验得到教育工作者的重视时,学校和家庭之间建立牢固的、相互信任的关系是可能的。
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引用次数: 0
Methods to reduce fraudulent participation and highlight autistic voices in research. 在研究中减少欺诈性参与和突出自闭症声音的方法。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-24 DOI: 10.1177/13623613241298037
Meghan E Carey, Kiley J McLean, Kyle Chvasta, Ashley de Marchena, Anne M Roux

Lay abstract: Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It's important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they're worth it to make sure our data are reliable, and include only autistic voices.

内容提要:在过去十年中,尤其是自闭症大流行以来,越来越多的研究都是在网上进行的。在网上开展研究可以创造机会,让世界各地的自闭症患者参与进来,使我们的研究更加多样化。然而,在网上开展研究曾导致骗子或假装自闭症患者参与自闭症研究。阻止骗子的策略可能会意外遗漏那些在处理时间和开放式问题方面有困难的自闭症患者。我们尝试了一些有据可查的策略来阻止骗子参与自闭症研究。我们还测试了新的策略,以了解它们的帮助程度。利用这些策略,我们怀疑 100 多名希望参与研究的人是骗子,因此没有邀请他们参与研究。作为研究人员,我们必须确保阻止骗子参与我们的研究。突出自闭症患者的声音并保证我们获得准确的结果非常重要。然而,识别骗子的策略也可能会遗漏有交流障碍的自闭症患者。这是不公平的,也可能使我们的结果不那么可靠。现有的和新的阻止骗子的策略需要花费大量的时间和资源,但为了确保我们的数据是可靠的,并且只包括自闭症患者的声音,这些策略是值得的。
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引用次数: 0
Repeated use of hospital-based services and delayed hospital discharges in a population-based cohort of autistic adults in Canada. 加拿大自闭症成人人群中重复使用医院服务和延迟出院的情况。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-21 DOI: 10.1177/13623613241299285
Yona Lunsky, Robert Balogh, Hannah Chung, Anna Durbin, Meng-Chuan Lai, Ami Tint, Jonathan Weiss, Barry Isaacs, Elizabeth Lin

Lay abstract: We know that autistic people have more health problems and are more likely to go to the emergency department and get hospitalized than other people, but we know less about the problems they have once they get to the hospital. In this study, we looked at all autistic adults in Ontario and compared them to adults who were not autistic and to adults who had other kinds of developmental disabilities to see who came back to the emergency department in the month after an emergency department visit, who got re-hospitalized in the month after being sent home from hospital, and who stayed in the hospital longer than they needed to because there was no place appropriate for them to go to. We found that both autistic males and females were more likely to have these things happen to them than the same age- and sex-matched adults who did not have developmental disabilities. We also found that adults with other kinds of developmental disabilities had similar problems to autistic people. This makes us think that we need to work harder to improve health care for autistic adults and adults with other developmental disabilities when they come to hospital. We also need to make community services work better, and work more closely with hospital services, so that people only come to hospital when they need to and that they can go home when they are ready.

内容提要:我们知道自闭症患者比其他人有更多的健康问题,也更有可能去急诊科就诊和住院,但我们对他们住院后的问题却知之甚少。在这项研究中,我们调查了安大略省所有患有自闭症的成年人,并将他们与不患有自闭症的成年人以及患有其他类型发育障碍的成年人进行了比较,以了解哪些人在看完急诊后的一个月内又去了急诊科,哪些人在出院回家后的一个月内又住进了医院,以及哪些人因为没有合适的地方可以去而在医院逗留的时间超过了他们所需要的时间。我们发现,与相同年龄和性别的非发育障碍成年人相比,患有自闭症的男性和女性更容易发生这些情况。我们还发现,患有其他类型发育障碍的成年人也有与自闭症患者类似的问题。这让我们认为,我们需要更加努力地改善自闭症成人和其他发育障碍成人入院时的医疗服务。我们还需要让社区服务工作做得更好,并与医院服务更紧密地合作,这样人们只有在需要的时候才会来医院,而当他们准备好的时候就可以回家了。
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引用次数: 0
Autistic adults display different verbal behavior only in mixed-neurotype interactions: Evidence from a referential communication task. 自闭症成人仅在混合神经类型的互动中表现出不同的言语行为:来自参照交流任务的证据
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-21 DOI: 10.1177/13623613241298376
Philippine Geelhand, Fanny Papastamou, Solène Jaspard, Mikhail Kissine

Lay abstract: Recent research shows that in conversations, both participants influence the outcome. More specifically, conversations do not go as smoothly when autistic and non-autistic people talk together compared to when people of the same neurotype (either all autistic or all non-autistic) talk to each other. In studies finding a "same-neurotype communicative advantage", interaction partners knew about each other's neurotype. Because of this methodological choice, it is unclear whether mixed-neurotype interactions go less smoothly because participants knew they were interacting with a different neurotype or because each neurotype really has a distinct communication style. In our study, 134 adults were grouped into same-sex pairs: 23 autistic, 23 non-autistic, and 21 mixed-neurotype pairs. The pairs did not know if the other person was autistic or not. They completed an online task where the "Director" instructs the "Matcher" to reorder abstract pictures. Pairs did this task in two ways: by typing in a live chat and by speaking into a microphone without video. The study looked at how long the task took and how much the Director talked/wrote. Results showed that non-autistic pairs were faster to complete the task than autistic pairs and mixed pairs, meaning pairs with at least one autistic person were slower in general to complete the task. Interestingly, in mixed pairs, only autistic Directors produced more words than non-autistic Directors, in both typing and speaking. These findings suggest that even without knowing about their partner's neurotype and seeing/hearing their partner, autistic adults communicate differently when they interact with a non-autistic person.

内容提要:最新研究表明,在对话中,参与者双方都会影响对话结果。更具体地说,当自闭症患者和非自闭症患者一起交谈时,与相同神经类型(全部为自闭症患者或全部为非自闭症患者)的人相互交谈时相比,交谈不会那么顺利。在发现 "相同神经类型交流优势 "的研究中,互动伙伴知道彼此的神经类型。由于这种方法上的选择,目前还不清楚混合神经类型的互动之所以不太顺利,是因为参与者知道他们在与不同的神经类型进行互动,还是因为每种神经类型确实都有独特的交流风格。在我们的研究中,134 名成年人被分成同性配对:23 对自闭症配对、23 对非自闭症配对和 21 对混合神经类型配对。这些配对者并不知道对方是否患有自闭症。他们完成了一项在线任务,由 "指导者 "指示 "匹配者 "对抽象图片重新排序。配对者以两种方式完成这项任务:在即时聊天中打字,以及在没有视频的情况下对着麦克风说话。研究考察了任务所需的时间以及 "导演 "的说话/书写内容。结果显示,非自闭症配对者完成任务的速度比自闭症配对者和混合配对者快,也就是说,至少有一名自闭症患者的配对者完成任务的速度普遍较慢。有趣的是,在混合配对中,只有自闭症指导员在打字和说话时比非自闭症指导员说出更多的单词。这些研究结果表明,即使不知道其伴侣的神经类型,也看不到/听不到其伴侣的声音,自闭症成年人在与非自闭症患者互动时,交流方式也会有所不同。
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引用次数: 0
"You should smile more": Population-level sex differences in smiling also exist in autistic people. "你应该多笑自闭症患者在微笑方面也存在人群水平的性别差异。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-19 DOI: 10.1177/13623613241301113
Casey J Zampella, Julia Parish-Morris, Jessica Foy, Meredith Cola, Robert T Schultz, John D Herrington

Societal expectations for social-emotional behavior differ across sexes; however, diagnostic definitions of autism do not account for this when delineating "typical" versus "atypical." This study examines sex differences in autism in one behavior associated with strong gender biases: smiling. Computer vision was used to quantify smiling in 60 autistic (20 female) and 67 neurotypical (25 female) youth during conversations. Effects of sex and diagnosis were examined on degree of smiling, smile prototypicality, changes in smiling, and impact of smiling on interaction quality. Sex differences in smiling persisted across diagnosis groups: females smiled more than males, and their smiles were more prototypical. Autistic youth smiled less, and less prototypically, than neurotypical youth, with no sex by diagnosis interactions. In autism, the association between smile activity and interaction quality approached statistical significance, seemingly driven by autistic males but not females. Findings are consistent with population trends for females to smile more during social exchanges and "display rules" requiring more positive expressivity from females. Autism has historically been defined based on differences between autistic and neurotypical males. Failure to acknowledge sex-based differences in social-emotional behavior may leave some females appearing to have fewer autistic traits, increasing their risk of being under-identified and misunderstood.

社会对社会情感行为的期望因性别而异;然而,自闭症的诊断定义在划分 "典型 "与 "非典型 "时并没有考虑到这一点。本研究探讨了自闭症患者在与强烈性别偏见相关的一种行为上的性别差异:微笑。研究人员利用计算机视觉对 60 名自闭症青少年(20 名女性)和 67 名神经典型青少年(25 名女性)在交谈过程中的微笑进行了量化。研究了性别和诊断对微笑程度、微笑原型、微笑变化以及微笑对互动质量的影响的影响。在不同诊断组中,微笑的性别差异依然存在:女性比男性笑得更多,她们的微笑也更典型。自闭症青少年比神经症青少年的微笑更少,也更少原型化,而性别与诊断之间没有相互作用。在自闭症患者中,微笑活动与互动质量之间的关系接近统计学意义,这似乎是由自闭症男性而非女性驱动的。研究结果与人群趋势一致,即女性在社会交往和 "展示规则 "要求女性更积极地表达时会露出更多笑容。自闭症的定义历来基于自闭症男性和神经畸形男性之间的差异。如果不承认社交情感行为中基于性别的差异,可能会使一些女性看起来自闭症特征较少,从而增加她们被低估和误解的风险。
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引用次数: 0
Unveiling missing voices - Lifelong Experiences of fathers parenting autistic sons: An interpretative phenomenological analysis. 揭开缺失的声音--父亲养育自闭症儿子的终身经历:解释现象学分析。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-19 DOI: 10.1177/13623613241290096
Borbála Gabriella Koltai, Eszter Pados, József Rácz

Lay abstract: Being a father of an autistic son is a profound and complex experience. Fathers adapt to their autistic sons' unique needs and are always in search of services to ease uncertainties about their sons' present and future. We interviewed 10 Hungarian fathers who have adult-aged autistic children. We asked them about their experiences raising their autistic sons during childhood and adulthood. Our study focused on fathers of adult-aged sons because most research has studied mothers' experiences of autistic children under 18 years old. It is also essential to know how to be like a father with adult-aged autistic children. Fathers shared their ongoing struggle with uncertainty, always seeking the best possible solutions for their sons. They also talked about how they understand and adapt to autism and accept their sons with their special, autism-related characteristics. The findings of this research provide a deeper understanding of fathers' parenting experience, giving suggestions for professionals on supporting them and making their experiences valuable to the community of parents raising autistic children.

内容提要:作为自闭症儿子的父亲,是一种深刻而复杂的体验。父亲们要适应自闭症儿子的独特需求,并一直在寻求服务,以缓解对儿子现在和未来的不确定性。我们采访了 10 位有成年自闭症子女的匈牙利父亲。我们询问了他们在童年和成年后抚养自闭症儿子的经历。我们的研究侧重于成年儿子的父亲,因为大多数研究都是研究母亲抚养 18 岁以下自闭症儿童的经历。了解如何像父亲一样养育成年自闭症儿童也是至关重要的。父亲们分享了他们与不确定性的持续斗争,始终为儿子寻求最佳解决方案。他们还谈到了如何理解和适应自闭症,如何接受儿子与自闭症有关的特殊性。这项研究的结果加深了人们对父亲育儿经验的理解,为专业人士提供了支持父亲的建议,并使他们的经验对抚养自闭症儿童的家长群体具有价值。
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引用次数: 0
Racial and ethnic group differences in service utilization in children with autism spectrum disorder: The role of parental stigma. 自闭症谱系障碍儿童在服务利用方面的种族和族裔群体差异:父母成见的作用。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-18 DOI: 10.1177/13623613241298043
Karla Rivera-Figueroa, Stephanie Milan, Thyde Dumont-Mathieu, Diane Quinn, Inge-Marie Eigsti

Racial and ethnic disparities in service utilization in autism are widely documented. Autism-related parental stigma may play a role if parents from racial/ethnic minoritized backgrounds experience dual stigma from autism and from membership in a marginalized group. This study examines racial/ethnic differences in autism-related stigma and compares the impact of stigma on service utilization in a large, diverse sample of US-based parents of autistic children (final sample = 764; White 41.6%, Black 16.6%, Latino/a/x/Hispanic 20.9%, Asian 7.5%, Multiracial 9.6%, Native American 1.8%, Pacific Islander 0.5%, Middle Eastern 0.2%, and Other 0.2%). Parents completed online surveys assessing affiliate and community stigma, service utilization, and perceived unmet treatment needs. Small but significant racial/ethnic group differences emerged in some aspects of stigma and service utilization. Specifically, Asian and Latino/a/x parents were less likely to fully engage in recommended services; Asian parents endorsed less service availability; Latino/a/x and multiracial parents reported more unmet needs; and Asian and White parents reported significantly more affiliate stigma. There was little indication that stigma contributed to racial/ethnic differences in service utilization, except for Asian families. Results indicate that socioeconomic factors interact with race/ethnicity to impact service use and stigma.

自闭症服务利用方面的种族和民族差异已被广泛记录在案。如果来自少数种族/族裔背景的家长因自闭症和边缘化群体成员身份而遭受双重羞辱,那么与自闭症相关的家长羞辱可能会发挥作用。本研究调查了自闭症相关污名的种族/民族差异,并比较了污名对美国自闭症儿童家长服务利用的影响(最终样本 = 764;白人 41.6%,黑人 16.6%,拉丁裔/a/x/西班牙裔 20.9%,亚裔 7.5%,多种族 9.6%,美国原住民 1.8%,太平洋岛民 0.5%,中东裔 0.2%,其他 0.2%)。家长们完成了在线调查,以评估附属机构和社区的耻辱感、服务利用率以及认为未得到满足的治疗需求。在污名化和服务利用的某些方面,种族/族裔群体之间出现了微小但明显的差异。具体来说,亚裔和拉丁裔/有色人种家长不太可能完全参与推荐的服务;亚裔家长认可的服务可用性较低;拉丁裔/有色人种和多种族家长报告的未满足需求较多;亚裔和白人家长报告的附属机构羞辱明显较多。除亚裔家庭外,几乎没有迹象表明污名化导致了服务利用方面的种族/民族差异。结果表明,社会经济因素与种族/族裔相互作用,影响了服务的使用和污名化。
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引用次数: 0
Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion. 自闭症的自我认同:为什么一些患有自闭症的成年人没有临床诊断,以及为什么这对融入社会很重要。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-18 DOI: 10.1177/13623613241297222
Katherine Ardeleanu, Hillary Steinberg, Tamara Garfield, Samuelle Voltaire, Lindsay Shea, Maci Brown, Kyle Chvasta, Catherine Do Tan

Lay abstract: Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services.

内容提要:大多数自闭症研究和服务的重点是被正式诊断为自闭症的患者。然而,自闭症活动家和自我倡导者已经提高了人们对阻碍个人寻求或获得自闭症诊断的挑战的认识。我们采访了 65 名同性恋和变性成人,他们或自我认同为自闭症患者,但未得到正式诊断,或得到了正式的自闭症诊断。我们发现,参与者对他们的自闭症诊断和/或身份进行了解释,并从中找到了肯定,他们在接受诊断时面临着巨大的障碍和阻力,并经历了作为诊断的障碍和产物的无效性。鉴于个人在获得诊断方面面临的挑战,我们建议研究人员和倡导者考虑将自我认同的自闭症患者纳入研究和服务中。
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引用次数: 0
Autism disproportionality in racially and ethnically minoritized and girl students in schools. 自闭症在少数种族和族裔学生以及在校女生中的比例失调。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-16 DOI: 10.1177/13623613241293046
Parker S Beckman, Maryellen Brunson McClain, Bryn Harris, Alexa Brownell, Britany M Beauchesne, Gwendolyn Davis, Jac'lyn Bera, Rabbiya Shahid

Lay abstract: Special education services are important for helping autistic students succeed, but many racially and ethnically minoritized and girl students face difficulties in getting support because they are not identified appropriately in schools. This study looks at the identification of autism in racially and ethnically minoritized and girl students across schools in the United States during the 2019-2020 school year. We found that girls are less likely to be identified compared to boys, which means they might not get the help they need. The gap between racially and ethnically minoritized students and White students in autism identification has improved slightly, but Latinx students still face challenges. We also found that where students live (their locale) affects their chances of being identified, especially for girls and Latinx students. These findings show that there are disparities in school autism identification, and understanding them can help policymakers, educators, and communities make changes to ensure all autistic students get the support they need.

内容提要:特殊教育服务对于帮助自闭症学生取得成功非常重要,但许多少数种族和族裔学生及女生在获得支持方面面临困难,因为学校没有对他们进行适当的识别。本研究调查了2019-2020学年美国各学校对少数种族和族裔学生及女生自闭症的识别情况。我们发现,与男生相比,女生被识别的可能性较低,这意味着她们可能得不到所需的帮助。在自闭症识别方面,少数种族和族裔学生与白人学生之间的差距略有改善,但拉丁裔学生仍面临挑战。我们还发现,学生的居住地(他们的所在地)会影响他们被识别的机会,尤其是对女生和拉丁裔学生而言。这些研究结果表明,在学校自闭症鉴定方面存在着差异,了解这些差异有助于政策制定者、教育工作者和社区做出改变,以确保所有自闭症学生都能获得所需的支持。
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引用次数: 0
Examining the effectiveness, feasibility, and acceptability of an advocacy program for Latinx families of transition-aged autistic youth. 研究针对过渡期自闭症青少年拉丁裔家庭的宣传计划的有效性、可行性和可接受性。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-11-12 DOI: 10.1177/13623613241292159
Janeth Aleman-Tovar, Meghan M Burke, Edwin Monárrez, Nicole Espinosa Zaldivar

Lay abstract: To support Latinx families of autistic youth navigate school-based transition services and adult disability services, we provided a family advocacy program entitled, ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). The ASISTIR program consisted of six, two-hour sessions and included the following topics: school-based transition planning, person-centered planning, Supplemental Security Income, Vocational Rehabilitation, and Home and Community-Based Medicaid Waiver. Twenty-nine Latinx family members completed the cohort-based ASISTIR program. After participating family members demonstrated increased knowledge of school-based transition planning and adult disability services. Participants also demonstrated increased empowerment and advocacy.

内容提要:为了帮助拉美裔自闭症青少年家庭获得学校提供的过渡服务和成人残疾服务,我们开展了一项名为 ASISTIR(Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición;支持我们的自闭症儿童获得过渡服务)的家庭宣传计划。ASISTIR 计划由六节课组成,每节课两小时,包括以下主题:基于学校的过渡规划、以人为本的规划、补充保障收入、职业康复以及基于家庭和社区的医疗补助豁免。29 名拉丁裔家庭成员完成了基于群组的 ASISTIR 计划。参与计划后,家庭成员对基于学校的过渡规划和成人残疾服务的了解有所增加。参与者还表现出了更强的能力和宣传能力。
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引用次数: 0
期刊
Autism
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