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Effects of autism spectrum disorder on parents labour market: Productivity loss and policy evaluation in Kazakhstan. 自闭症谱系障碍对父母劳动力市场的影响:哈萨克斯坦的生产力损失和政策评估。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-04 DOI: 10.1177/13623613241273042
Lyazzat Kosherbayeva, Laura Kozhageldiyeva, Yolanda Pena-Boquete, Aizhan Samambayeva, Maria Seredenko

Lay abstract: Kazakhstan has witnessed a significant increase in the number of Autism Spectrum Disorder cases due to the implementation of mechanisms for early detection. However, despite these efforts, accessing quality services and effective interventions for individuals with Autism Spectrum Disorder remains challenging. While the government has implemented various policies to address the impact of Autism Spectrum Disorder on the labour market, especially for those with disabilities, the effectiveness of these policies needs to be evaluated. Therefore, this article aims to estimate the loss of productivity by calculating the cost of non-working for parents of children with Autism Spectrum Disorder. To achieve this goal, we combine data from official sources with data from our own survey to estimate the loss of productivity using human capital models. In addition, we conduct policy simulations to assess the impact of the existing policy implemented in Kazakhstan that recognises the time of caring for children with Autism Spectrum Disorder and disability as working in the paid labour market. Our results reveal that the productivity loss is substantial, with mothers of children with Autism Spectrum Disorder being particularly affected. Furthermore, based on the outcomes of the policy simulations, it becomes evident that policies solely targeting parents of children with Autism Spectrum Disorder and disability are insufficient to address the labour market gaps and the consequent loss of productivity. To effectively mitigate the impact of Autism Spectrum Disorder in the labour market, a more comprehensive approach is needed. This approach should encompass a broader range of interventions and support mechanisms, including those for individuals without disabilities and parents of children with Autism Spectrum Disorder.

内容提要:由于实施了早期检测机制,哈萨克斯坦的自闭症谱系障碍病例数量大幅增加。然而,尽管做出了这些努力,但自闭症谱系障碍患者获得优质服务和有效干预仍面临挑战。虽然政府已经实施了各种政策来应对自闭症谱系障碍对劳动力市场的影响,尤其是对残疾人士的影响,但这些政策的有效性仍有待评估。因此,本文旨在通过计算自闭症谱系障碍儿童家长不工作的成本来估算生产力的损失。为实现这一目标,我们将官方来源的数据与我们自己的调查数据相结合,利用人力资本模型估算生产力损失。此外,我们还进行了政策模拟,以评估哈萨克斯坦实施的现行政策的影响,该政策将照顾自闭症谱系障碍儿童和残疾儿童的时间视为在有偿劳动力市场工作的时间。我们的结果显示,生产力损失巨大,自闭症谱系障碍儿童的母亲受到的影响尤为严重。此外,根据政策模拟的结果,仅针对自闭症谱系障碍和残疾儿童父母的政策显然不足以解决劳动力市场的差距以及由此造成的生产力损失。为了有效减轻自闭症谱系障碍对劳动力市场的影响,需要采取更加全面的方法。这种方法应包含更广泛的干预措施和支持机制,包括针对非残疾人和自闭症谱系障碍儿童家长的干预措施和支持机制。
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引用次数: 0
(Re)thinking about self-harm and autism: Findings from an online qualitative study on self-harm in autistic adults. (对自残和自闭症的(重新)思考:关于自闭症成人自我伤害的在线定性研究结果。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-04 DOI: 10.1177/13623613241271931
Sarah Je Marsden, Rachael Eastham, Alexandra Kaley

Lay abstract: There is a higher prevalence of self-harming behaviours within the autistic community than is experienced by the general population, in addition to co-occurring mental health conditions such as anxiety and depression. To date, research has focused on quantifying and categorising the numbers of autistic people self-harming, what types of harming they are engaging in and what functions the harming performs. Autism research has historically focused on the opinions and experiences of parents, carers and clinicians, with a belief that autistic people are unable to present their own experiences and thoughts accurately. This study adopted a qualitative method to develop themes arising from online forum discussions, using the words of autistic adults talking about how they experience and understand their self-harming behaviours. The analysis discovered that self-harming behaviours are used by autistic people as a way of coping with anxiety and depression and to relieve the build up of stress and sensory or mental overload that can otherwise lead to a meltdown. Repetitive behaviours such as stimming are also used to relieve the buildup of sensory over-stimulation and anxiety, but both stimming and meltdowns can also be self-harming behaviours if they cause tissue damage, and are believed to be childhood presentations which are stigmatised if expressed by an autistic adult. Many autistic adults find it hard to get help with self-harming behaviours because they are not taken seriously by professionals, as it is seen as part of autism and cannot be helped, or the professionals do not have enough knowledge of autism.

内容提要:自闭症群体中自我伤害行为的发生率高于普通人群,此外,他们还同时患有焦虑症和抑郁症等精神疾病。迄今为止,研究主要集中在对自闭症患者自我伤害的数量、伤害类型和伤害功能进行量化和分类。自闭症研究历来侧重于家长、照护者和临床医生的意见和经验,认为自闭症患者无法准确表达自己的经历和想法。本研究采用定性方法,通过自闭症成年人谈论他们如何经历和理解自我伤害行为的话语,从在线论坛的讨论中发展出主题。分析发现,自闭症患者将自我伤害行为作为应对焦虑和抑郁的一种方式,并以此来缓解积聚的压力和感官或精神超负荷,否则就会导致崩溃。刺激等重复行为也用于缓解感官过度刺激和焦虑的积累,但刺激和崩溃如果造成组织损伤,也可能是自残行为。许多成年自闭症患者发现自己的自残行为很难得到帮助,因为专业人士并不重视这些行为,认为这是自闭症的一部分,无法帮助他们,或者专业人士对自闭症缺乏足够的了解。
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引用次数: 0
Factors mediating pre-existing autism diagnosis and later suicidal thoughts and behaviors: A follow-up cohort study. 自闭症诊断与日后自杀想法和行为之间的中介因素:一项后续队列研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-01-30 DOI: 10.1177/13623613231223626
Jung-Chi Chang, Meng-Chuan Lai, Shu-Sen Chang, Susan Shur-Fen Gau

Lay abstract: Autistic people are more likely to experience suicidal thoughts and behaviors. The underlying relationships between potential risk factors and suicidal thoughts and behaviors in autistic individuals remain unclear. To understand this, we investigated whether specific factors in childhood/youth explain the effects of pre-existing autism spectrum disorder (ASD) diagnoses on later suicidal thoughts and behaviors in adolescence/adulthood. We assessed internalizing and externalizing problems, bullying experiences, and executive functions (including cognitive flexibility, sustained attention, and spatial working memory) at an average baseline age of 13.4 years and suicidal thoughts and behaviors at an average follow-up age of 19.2 years among 129 autistic and 121 typically developing (TD) individuals. During the follow-up period in adolescence/adulthood, autistic individuals were more likely to report suicidal thoughts than TD individuals. Being bullied partially accounted for the relationship between a pre-existing ASD diagnosis and later-reported higher suicidal thoughts. Contrary to our hypothesis, higher (instead of lower) cognitive flexibility in some autistic young people appeared to partially explain their higher rates of suicidal thoughts compared with typically developing young people. The findings imply that school bullying prevention and tailored intervention programs for autistic people, especially those with higher cognitive flexibility, are warranted to reduce their risks of experiencing suicidal thoughts.

内容提要:自闭症患者更容易产生自杀念头和行为。自闭症患者的潜在风险因素与自杀想法和行为之间的潜在关系仍不清楚。为了了解这一点,我们研究了童年/青年时期的特定因素是否可以解释先前存在的自闭症谱系障碍(ASD)诊断对青少年/成年期自杀想法和行为的影响。我们评估了 129 名自闭症患者和 121 名发育典型(TD)患者在平均 13.4 岁基线年龄时的内化和外化问题、欺凌经历和执行功能(包括认知灵活性、持续注意力和空间工作记忆),以及在平均 19.2 岁随访年龄时的自杀想法和行为。在青春期/成年期的随访期间,自闭症患者比典型发育障碍患者更有可能报告自杀想法。自闭症诊断与后来报告的较高自杀念头之间的关系中,被欺凌是部分原因。与我们的假设相反,一些患有自闭症的青少年认知灵活性较高(而不是较低),这似乎可以部分解释他们与发育正常的青少年相比自杀念头较高的原因。研究结果表明,有必要针对自闭症患者,尤其是认知灵活性较高的自闭症患者,开展校园欺凌预防和有针对性的干预计划,以降低他们产生自杀念头的风险。
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引用次数: 0
Suicide risk in transition-aged autistic youth: The link among executive function, depression, and autistic traits. 过渡期自闭症青少年的自杀风险:执行功能、抑郁和自闭症特征之间的联系。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-10 DOI: 10.1177/13623613241227983
Michal L Cook, Brianne Tomaszewski, Elena Lamarche, Karrah Bowman, Claire B Klein, Sara Stahl, Laura G Klinger

Lay abstract: Autistic people are more likely to consider suicide than non-autistic people, with transition-aged youth (ages 16-21 years) at potentially the highest risk. Research has also shown that difficulties with executive functioning (e.g., difficulties with organization, sequencing, and decision-making) may heighten suicide risk among non-autistic people, but it is not clear whether this is also true for autistic people. This study explored this question by asking 183 transition-aged autistic youth about their experience with suicidal behavior and examining the relationship between their responses and additional measures of depression, autistic traits, and executive function skills. About one-third of autistic transition-aged youth (33.3%) said that they had experienced thoughts of hurting themselves with the intent to end their lives (i.e., suicidal ideation). Both depression and executive function challenges predicted suicide risk (i.e., participants who experienced depression were more likely to have had suicidal thoughts than those who had not, and participants who had more difficulty with executive function skills were more likely to have had suicidal thoughts than those who had less difficulty). These findings suggest that executive functioning, a common area of difficulty among autistic people, is an important indicator of suicide risk in this population.

内容提要:与非自闭症患者相比,自闭症患者更有可能考虑自杀,而处于过渡期的青少年(16-21 岁)可能面临最高的自杀风险。研究还表明,执行功能方面的困难(如组织、排序和决策方面的困难)可能会增加非自闭症患者的自杀风险,但尚不清楚自闭症患者是否也存在这种情况。本研究通过询问 183 名处于过渡期的自闭症青少年有关自杀行为的经历,并研究他们的回答与抑郁、自闭症特征和执行功能技能等其他测量指标之间的关系,对这一问题进行了探讨。约有三分之一(33.3%)的处于过渡期的自闭症青少年表示,他们曾有过伤害自己并意图结束自己生命的想法(即自杀意念)。抑郁和执行功能方面的挑战都预示着自杀风险(即,经历过抑郁的参与者比没有经历过抑郁的参与者更有可能产生自杀念头,而在执行功能技能方面遇到困难的参与者比遇到困难较少的参与者更有可能产生自杀念头)。这些研究结果表明,执行功能是自闭症患者普遍存在的一个困难领域,也是该人群自杀风险的一个重要指标。
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引用次数: 0
Psychometric exploration of the RAADS-R with autistic adults: Implications for research and clinical practice. 自闭症成人 RAADS-R 心理计量学探索:对研究和临床实践的启示。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-02 DOI: 10.1177/13623613241228329
Alexandra Sturm, Sijia Huang, Vanessa Bal, Ben Schwartzman

Lay abstract: Surveys used to screen for autism are being used much more by adults. Adults and clinicians want to be confident that the results from their surveys are accurate. If scores are not accurate, it is not possible to compare the scores of different groups of individuals. There are also concerns that these surveys do not accurately identify autistic individuals. This study explored the accuracy of two commonly used autism screening surveys for adults: the RAADS-R and the RAADS-14. The accuracy of these two screening tools was measured using a sample of 839 adults. Adults in the study were in one of the following categories: (1) diagnosed with autism, (2) adults who considered themselves to be autistic but had not been diagnosed, (3) adults who were unsure whether they were autistic, and (4) adults who did not consider themselves to be autistic and had not been diagnosed. The study found that the RAADS-R and the RAADS-14 are accurate. The study also found that a person's age, gender, autism diagnosis, or whether an individual considered themselves to be autistic did not impact how they understood the survey. Survey accuracy could be improved by changing the number of question responses from four to two. Importantly, individuals with a clinical diagnosis of autism and those who considered themselves to be autistic responded to survey items in a very similar way. Individuals with autism diagnoses and those who were unsure whether they were autistic were more different in their responses. Four specific survey items related to sensory experiences and social interaction identified key differences between autistic and non-autistic adults.

内容摘要:用于筛查自闭症的调查越来越多地被成人使用。成人和临床医生都希望确信他们的调查结果是准确的。如果分数不准确,就无法比较不同群体的分数。还有人担心这些调查不能准确识别自闭症患者。本研究探讨了两种常用的成人自闭症筛查调查的准确性:RAADS-R 和 RAADS-14。这两种筛查工具的准确性是通过对 839 名成人进行抽样调查得出的。参与研究的成人属于以下类别之一:(1) 已确诊为自闭症患者,(2) 自认为患有自闭症但尚未确诊的成人,(3) 不确定自己是否患有自闭症的成人,以及 (4) 不认为自己患有自闭症且尚未确诊的成人。研究发现 RAADS-R 和 RAADS-14 是准确的。研究还发现,一个人的年龄、性别、自闭症诊断或是否认为自己是自闭症患者并不影响他们对调查的理解。将问题回答的数量从四个改为两个,可以提高调查的准确性。重要的是,临床诊断为自闭症的人和认为自己是自闭症患者的人对调查项目的回答非常相似。被诊断出患有自闭症的人和不确定自己是否患有自闭症的人在回答问题时的差异较大。与感官体验和社会交往有关的四个特定调查项目确定了自闭症成人和非自闭症成人之间的主要差异。
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引用次数: 0
Occurrence and predictors of lifetime suicidality and suicidal ideation in autistic adults. 自闭症成人终生自杀和自杀意念的发生和预测因素。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-10 DOI: 10.1177/13623613231225901
J van Bentum, M Sijbrandij, M Huibers, S Begeer

Lay abstract: Over the past few years, more and more research is showing that many autistic people are at an increased risk for suicide. In this study, we asked participants from the Netherlands Autism Register, which is longitudinal register including individuals with autism, about their possible experiences with thoughts and feelings about suicide. Specifically, we looked at whether these thoughts and feelings in their lifetime and in the past month were related to various factors (such as their age, gender, and having psychiatric disorder diagnoses). We found that 80% of the participants had experienced thoughts about or even attempted to take their own life at least once throughout their lifetime. Furthermore, in a subgroup of participants, we found that the presence of a psychiatric disorder diagnosis, feelings of loneliness, and a higher number of autistic traits were associated with experiencing suicidal thoughts and feelings in their lifetime. For those who experienced these suicidal thoughts in the past month, we found that having (multiple) psychiatric disorder diagnoses and a higher number of autistic traits were related to more severe and frequent thoughts about suicide in the past month. Our findings show that additional factors in autistic individuals should be considered when assessing the suicide risk, and it brings us one step closer to understanding why suicide is more common for autistic people.

内容提要:过去几年来,越来越多的研究表明,许多自闭症患者的自杀风险越来越高。在这项研究中,我们向荷兰自闭症登记处的参与者询问了他们可能有过的自杀想法和感受。具体来说,我们调查了这些想法和感觉在他们一生中和过去一个月中是否与各种因素(如年龄、性别和精神障碍诊断)有关。我们发现,80% 的参与者在一生中至少有过一次自杀的念头,甚至尝试过自杀。此外,我们还在一个参与者子群体中发现,精神障碍诊断、孤独感和自闭症特征较多与一生中出现自杀念头和情绪有关。对于那些在过去一个月内有过自杀念头的人,我们发现患有(多种)精神障碍诊断和较多自闭症特征与过去一个月内更严重和更频繁的自杀念头有关。我们的研究结果表明,在评估自杀风险时,应考虑自闭症患者的其他因素,这也让我们离理解自闭症患者自杀更常见的原因更近了一步。
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引用次数: 0
The role of autism and alexithymia traits in behavioral and neural indicators of self-concept and self-esteem in adolescence. 自闭症和亚历山大症特征在青春期自我概念和自尊的行为和神经指标中的作用。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-27 DOI: 10.1177/13623613241232860
Renske van der Cruijsen, Sander Begeer, Eveline A Crone

Lay abstract: Developing a positive view of the self is important for maintaining a good mental health, as feeling negative about the self increases the risk of developing internalizing symptoms such as feelings of depression and anxiety. Even though autistic individuals regularly struggle with these internalizing feelings, and both self-concept and internalizing feelings are known to develop during adolescence, there is a lack of studies investigating the development of positive self-concept and self-esteem in autistic adolescents. Here, we studied academic, physical, and prosocial self-concept as well as self-esteem in adolescent males with and without autism on both the behavioral and neural level. We additionally focused on similarities in one's own and peers' perspectives on the self, and we assessed a potential role of alexithymia (i.e. having trouble identifying and describing one's feelings) in developing a more negative view of the self. Results showed that there were no group differences in self-esteem, self-concept, or underlying neural activation. This shows that autistic adolescent males use the same neural processes when they evaluate their traits. However, regardless of clinical diagnosis, a higher number of autism traits was related to a less positive physical and prosocial self-concept, whereas more difficulty identifying one's feelings was related to lowered self-esteem and less activation in medial prefrontal cortex during self-evaluations. Therefore, in treatment of autistic adolescents with low self-esteem, it is important to take into account and possibly aim to improve alexithymic traits as well.

内容提要:培养积极的自我概念对于保持良好的心理健康非常重要,因为对自我的消极看法会增加出现抑郁和焦虑等内化症状的风险。尽管自闭症患者经常与这些内化情绪作斗争,而且自我概念和内化情绪都是在青春期形成的,但缺乏对自闭症青少年积极自我概念和自尊发展的研究。在此,我们从行为和神经层面研究了患有自闭症和未患有自闭症的青少年男性在学业、身体、亲社会方面的自我概念和自尊。此外,我们还关注了自闭症患者和同龄人对自我看法的相似性,并评估了自闭症(即难以识别和描述自己的感受)在形成更消极的自我观方面的潜在作用。结果表明,在自尊、自我概念或潜在的神经激活方面不存在群体差异。这表明,患有自闭症的青少年男性在评价自己的特质时使用相同的神经过程。然而,无论临床诊断如何,自闭症特征越多,其身体和亲社会的自我概念就越不积极,而越难识别自己的感受,其自尊心就越低,自我评价时内侧前额叶皮层的激活程度就越低。因此,在治疗自闭症青少年的自卑心理时,必须考虑到并在可能的情况下以改善自闭症特质为目标。
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引用次数: 0
Developmental associations between motor and communication outcomes in Fragile X syndrome: Variation in the context of co-occurring autism. 脆性 X 综合征患者运动和沟通能力之间的发展关联:自闭症并发情况下的差异。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-03-08 DOI: 10.1177/13623613231225498
Elizabeth A Will, Kimberly J Hills, Kayla Smith, Samuel McQuillin, Jane E Roberts

Lay abstract: Fragile X syndrome (FXS), the leading heritable cause of intellectual disability, has a co-occurrence rate of autism spectrum disorder (ASD) estimated at ~60%. Children with FXS experience delayed achievement and slower development of key motor abilities, which happens to an even greater extent for children with both FXS and ASD. A multitude of studies have demonstrated that motor abilities are foundational skills related to later communication outcomes in neurotypical development, as well as in the context of ASD. However, these associations remain unexamined in FXS, or FXS + ASD. In this study, we aimed to determine the associations between early motor skills and their rate of development on communication outcomes in FXS. Furthermore, we investigated whether these associations varied in the context of co-occurring FXS + ASD. Results revealed within-FXS variation in the context of co-occurring ASD between some aspects of motor development and communication outcomes, yet within-FXS consistency between others. Findings provide evidence for variability in developmental processes and outcomes in FXS in the context of co-occurring ASD and offer implications for intervention.

摘要:脆性 X 综合征(FXS)是导致智力残疾的主要遗传原因,自闭症谱系障碍(ASD)的并发率估计约为 60%。罹患 FXS 的儿童在关键运动能力方面会出现成就延迟和发展缓慢的情况,而同时罹患 FXS 和 ASD 的儿童则更容易出现这种情况。大量研究表明,运动能力是与神经发育正常儿童以及 ASD 儿童日后的沟通结果相关的基础技能。然而,这些关联在 FXS 或 FXS + ASD 中仍未得到研究。在这项研究中,我们旨在确定早期运动技能及其发展速度与 FXS 沟通结果之间的关联。此外,我们还研究了这些关联在 FXS + ASD 同时存在的情况下是否会发生变化。结果表明,在并发 ASD 的情况下,FXS 患者的某些运动发展和沟通结果之间存在差异,而其他方面则存在一致性。研究结果为 FXS 在并发 ASD 的背景下的发育过程和结果的可变性提供了证据,并为干预措施提供了启示。
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引用次数: 0
Mortality risk among Autistic children and young people: A nationwide birth cohort study. 自闭症儿童和青少年的死亡风险:全国出生队列研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-04 DOI: 10.1177/13623613231224015
Hien Vu, Nicholas Bowden, Sheree Gibb, Richard Audas, Joanne Dacombe, Laurie McLay, Andrew Sporle, Hilary Stace, Barry Taylor, Hiran Thabrew, Reremoana Theodore, Jessica Tupou, Philip J Schluter

Lay abstract: Existing literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0-24 years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population.

业余摘要:现有文献表明,自闭症患者的预期寿命较短,但人们对自闭症儿童和青少年(0-24 岁)的死亡风险知之甚少。我们利用一项为期 15 年的全国出生队列研究来估算奥特亚罗瓦/新西兰自闭症儿童和青少年的死亡风险。这项研究包括 895 707 名儿童,其中 11 919 名(1.4%)患有自闭症。我们发现,与非自闭症人群相比,自闭症患者的死亡风险明显更高。此外,我们还发现,与男性相比,女性患自闭症的风险明显更高,而那些同时患有智力障碍的儿童患自闭症的风险也更高。我们需要加大努力,更好地满足这一人群的健康需求。
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引用次数: 0
What are the autism research priorities of autistic adults in Scotland? 苏格兰成人自闭症患者的自闭症研究重点是什么?
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-04 DOI: 10.1177/13623613231222656
Eilidh Cage, Catherine J Crompton, Sarah Dantas, Khiah Strachan, Rachel Birch, Mark Robinson, Stasa Morgan-Appel, Charlie MacKenzie-Nash, Aaron Gallagher, Monique Botha

Lay abstract: Although research has the potential to improve autistic people's lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people's lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people's knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people's research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.

内容提要:尽管研究工作有可能改善自闭症患者的生活,但很多资金都用于研究自闭症患者认为对其日常生活影响甚微的课题。自闭症患者的生活会因居住地的不同而有所不同,而苏格兰在很多方面都是一个独特的国家。我们希望了解苏格兰的自闭症患者希望研究哪些课题。我们由自闭症和非自闭症研究人员(包括大学研究人员和社区研究人员)组成的团队制作了一份调查表,让 225 名成年自闭症患者对可能的研究课题的重要性进行评分和排序,并分享他们对哪些课题重要的看法。五个最重要的主题是心理健康和幸福、自闭症患者的识别和诊断、支持服务(包括医疗保健和社会关怀)、非自闭症患者的知识和态度以及影响自闭症女性的问题。最不重要的三个主题是自闭症的遗传学或生物学方面、自闭症的治疗/干预以及自闭症的病因。我们的调查结果表明,苏格兰的自闭症患者希望研究能够关注与他们日常生活息息相关的问题。此外,苏格兰政府表示,他们将在最新的政策计划中听取自闭症患者的意见,我们认为,考虑自闭症患者的研究重点是其中重要的一部分。我们的研究结果还进一步呼吁自闭症研究人员改变研究方式和研究内容。
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