为什么照顾者停止应用行为分析(ABA)而选择基于沟通的自闭症干预

IF 1.1 Q4 PSYCHOLOGY, DEVELOPMENTAL
Henny Kupferstein
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These comments augmented the survey Likert scores with a qualitative impression of the diverse intervention-related attitudes among participants. Investigating the lived experiences of autism intervention recipients illuminated the scope of the long-term impacts of each intervention that was chosen. Overall, autistics who received no intervention fared best, based on the lowest reported PTSS. These findings may inform the potential redesign of autism interventions based on the firsthand reported experiences and opinions of autistics.\n\n\nDesign/methodology/approach\nThe aim of this study was to conduct research that is both question-driven and data-driven to aid in the analysis of existing data (Van Helden, 2013). In the research question-driven approach, the independent variables were the intervention type and duration of exposure relative to lifespan; the dependent variables were the PTSS severity score and binary indicator of meeting PTSS criteria. The analyses that were conducted included linear regression analyses of severity score on intervention type and duration, and χ2 tests for independence of the probabilities of PTSS criterion satisfaction and intervention type. This experiment was designed to test the data-driven hypothesis that the prevalence and severity of PTSS are dependent on the type of autism intervention and duration of exposure. After reviewing the primary data set, the data-driven inquiry determined that the sample for secondary analysis should be categorized by communication-based vs non-communication-based intervention type in order to best complement the limitations and strengths of the published findings from the primary analysis.\n\n\nFindings\nAutistics who received no intervention had a 59 percent lower likelihood of meeting the PTSS criteria when compared to their ABA peers, and they remained 99.6 percent stable in their reported symptoms throughout their lifespan (R2=0.004). ABA recipients were 1.74 times more likely to meet the PTSS criteria when compared to their AAC peers. Within the 23 percent who selected an intervention other than ABA, consisting of psychotherapy, mental health, son-rise and other varying interventions, 63 percent were asymptomatic. This suggests that the combined benefits of communication-based interventions over behaviorism-influenced ABA practices may contribute to enhanced quality of life. Although not generalizable beyond the scope of this study, it is indicated from the data that autistics who received no intervention at all fared best over their lifetimes.\n\n\nResearch limitations/implications\nThe obvious advantage of a secondary analysis is to uncover key findings that may have been overlooked in the preliminary study. Omitted variables in the preliminary data leave the researcher naive to crucially significant findings, which may be mitigated by subsequent testing in follow-up studies (Cheng and Phillips, 2014, p. 374). Frequency tables and cross-tabulations of all variables included in the primary analysis were reproduced. The secondary analysis of existing data was conducted from the design variables used in the original study and applied in the secondary analyses to generate less biased estimates (Lohr, 2010; Graubard and Korn, 1996). Inclusion criteria for each intervention group, PTSS scores and exposure duration, were inherited from the primary analysis, to allow for strategic judgment about the coding of the core variables pertaining to AAC and PTSS. The data sample from 460 respondents was reduced to a non-ABA group of n=330. An external statistician scored each respondent, and interrater reliability was assessed using Cohen’s κ coefficient (κ=1).\n\n\nPractical implications\nIncluding the autistic voice in the long-term planning of childhood interventions is essential to those attempting to meet the needs of the individuals, their families and communities. Both parents and autistic participant quotes were obtained directly from the optional comments to reveal why parents quit or persisted with an autism intervention.\n\n\nSocial implications\nPractitioners and intervention service providers must consider this feedback from those who are directly impacted by the intervention style, frequency or intensity. The need for such work is confirmed in the recent literature as well, such as community-based participatory research (Raymaker, 2016). Autistics should be recognized as experts in their own experience (Milton, 2014). Community–academic partnerships are necessary to investigate the needs of the autistic population (Meza et al., 2016).\n\n\nOriginality/value\nMost autistic people do not consider autism to be a mental illness nor a behavior disorder. It is imperative to recognize that when injurious behavior persists, and disturbance in mood, cognition, sleep pattern and focus are exacerbated, the symptoms are unrelated to autism and closely align to the diagnostic criteria for posttraumatic stress disorder (PTSD). When PTSD is underdiagnosed and untreated, the autistic individual may experience hyperarousal and become triggered by otherwise agreeable stimuli. Since autism interventions are typically structured around high contact, prolonged hours and 1:1 engagement, the nature of the intervention must be re-evaluated as a potentially traumatic event for an autistic person in the hyperarousal state. 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引用次数: 3

摘要

目的探讨自闭症患者及其照顾者选择应用行为分析(ABA)之外的干预措施的原因,以及他们的决定如何影响他们的一生。焦点小组分为寻求辅助和替代沟通(AAC)为基础的支持,接受ABA,选择其他干预或根本不接受干预。为了评估所有干预类型的长期影响,将ABA接受者报告的创伤后应激症状(PTSS)与非ABA接受者进行比较。使用混合方法的主题分析,可选的意见与定量在线调查一起提交,以审查紧急主题。这些评论增加了调查李克特得分与参与者之间的不同干预相关态度的定性印象。调查自闭症干预接受者的生活经历,阐明了所选择的每种干预措施的长期影响范围。总的来说,根据最低的ptsd报告,没有接受干预的自闭症患者表现最好。这些发现可能为基于第一手报道的自闭症经验和观点的自闭症干预措施的重新设计提供信息。设计/方法/方法本研究的目的是进行问题驱动和数据驱动的研究,以帮助分析现有数据(Van Helden, 2013)。在研究问题驱动法中,自变量为相对于寿命的干预类型和暴露持续时间;因变量为PTSS严重程度评分和满足PTSS标准的二元指标。进行的分析包括严重程度评分对干预类型和持续时间的线性回归分析,以及PTSS标准满意度概率与干预类型独立性的χ2检验。本实验旨在验证数据驱动的假设,即ptsd的患病率和严重程度取决于自闭症干预的类型和暴露时间。在审查了主要数据集之后,数据驱动的调查确定了用于二次分析的样本应按基于通信的干预类型与非基于通信的干预类型进行分类,以便最好地补充来自主要分析的已发表结果的局限性和优势。研究发现,与ABA患者相比,未接受干预的自闭症患者达到PTSS标准的可能性低59%,并且在其一生中报告的症状保持99.6%的稳定性(R2=0.004)。ABA接受者与AAC同龄人相比,达到PTSS标准的可能性高出1.74倍。23%的人选择了ABA以外的干预措施,包括心理治疗、心理健康、儿子崛起和其他不同的干预措施,其中63%是无症状的。这表明,基于沟通的干预与行为主义影响的ABA实践的综合效益可能有助于提高生活质量。虽然不能概括出本研究的范围,但从数据中可以看出,没有接受任何干预的自闭症患者在他们的一生中表现最好。研究的局限性/意义二次分析的明显优势是揭示初步研究中可能被忽视的关键发现。初步数据中遗漏的变量使研究人员对至关重要的发现缺乏经验,这可能会通过后续研究中的后续测试来减轻(Cheng和Phillips, 2014, p. 374)。复制了初级分析中所有变量的频率表和交叉表。现有数据的二次分析是从原始研究中使用的设计变量进行的,并应用于二次分析,以产生较少偏差的估计(Lohr, 2010;格劳巴德和科恩,1996)。每个干预组的纳入标准,PTSS评分和暴露时间,继承自最初的分析,以便对与AAC和PTSS有关的核心变量的编码进行战略性判断。460名受访者的数据样本减少到非aba组n=330。外部统计学家对每个被调查者进行评分,并使用Cohen 's κ系数(κ=1)评估相互信度。实际意义在儿童干预的长期规划中包括自闭症的声音对于那些试图满足个人、家庭和社区需求的人来说是至关重要的。父母和自闭症参与者的引用都是直接从可选评论中获得的,以揭示父母退出或坚持自闭症干预的原因。社会影响实践者和干预服务提供者必须考虑那些直接受到干预方式、频率或强度影响的人的反馈。 最近的文献也证实了这种工作的必要性,例如基于社区的参与性研究(Raymaker, 2016)。自闭症患者应该被认为是他们自己经验的专家(Milton, 2014)。社区-学术伙伴关系对于调查自闭症人群的需求是必要的(Meza et al., 2016)。大多数自闭症患者并不认为自闭症是一种精神疾病或行为障碍。我们必须认识到,当伤害行为持续存在,情绪、认知、睡眠模式和注意力紊乱加剧时,这些症状与自闭症无关,而与创伤后应激障碍(PTSD)的诊断标准密切相关。当PTSD未得到充分诊断和治疗时,自闭症个体可能会经历过度觉醒,并被其他令人愉快的刺激所触发。由于自闭症干预通常是围绕高接触、长时间和1:1参与进行的,因此必须重新评估干预的性质,对处于高唤醒状态的自闭症患者来说,这是一个潜在的创伤性事件。任何触发大于帮助的干预措施都应避免并在出现ptsd时停止。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions
Purpose The purpose of this paper is to explore why autistic people and their caregivers choose interventions other than applied behavior analysis (ABA), and how their decision impacts them over their lifespan. The focus group was divided into those who pursued augmentative and alternative communication (AAC)-based supports, received ABA, selected other interventions or received no intervention at all. The reported posttraumatic stress symptoms (PTSS) of ABA recipients were compared to non-ABA recipients in order to evaluate the long-term impacts of all intervention types. Using a mixed-method thematic analysis, optional comments submitted alongside a quantitative online survey were reviewed for emergent themes. These comments augmented the survey Likert scores with a qualitative impression of the diverse intervention-related attitudes among participants. Investigating the lived experiences of autism intervention recipients illuminated the scope of the long-term impacts of each intervention that was chosen. Overall, autistics who received no intervention fared best, based on the lowest reported PTSS. These findings may inform the potential redesign of autism interventions based on the firsthand reported experiences and opinions of autistics. Design/methodology/approach The aim of this study was to conduct research that is both question-driven and data-driven to aid in the analysis of existing data (Van Helden, 2013). In the research question-driven approach, the independent variables were the intervention type and duration of exposure relative to lifespan; the dependent variables were the PTSS severity score and binary indicator of meeting PTSS criteria. The analyses that were conducted included linear regression analyses of severity score on intervention type and duration, and χ2 tests for independence of the probabilities of PTSS criterion satisfaction and intervention type. This experiment was designed to test the data-driven hypothesis that the prevalence and severity of PTSS are dependent on the type of autism intervention and duration of exposure. After reviewing the primary data set, the data-driven inquiry determined that the sample for secondary analysis should be categorized by communication-based vs non-communication-based intervention type in order to best complement the limitations and strengths of the published findings from the primary analysis. Findings Autistics who received no intervention had a 59 percent lower likelihood of meeting the PTSS criteria when compared to their ABA peers, and they remained 99.6 percent stable in their reported symptoms throughout their lifespan (R2=0.004). ABA recipients were 1.74 times more likely to meet the PTSS criteria when compared to their AAC peers. Within the 23 percent who selected an intervention other than ABA, consisting of psychotherapy, mental health, son-rise and other varying interventions, 63 percent were asymptomatic. This suggests that the combined benefits of communication-based interventions over behaviorism-influenced ABA practices may contribute to enhanced quality of life. Although not generalizable beyond the scope of this study, it is indicated from the data that autistics who received no intervention at all fared best over their lifetimes. Research limitations/implications The obvious advantage of a secondary analysis is to uncover key findings that may have been overlooked in the preliminary study. Omitted variables in the preliminary data leave the researcher naive to crucially significant findings, which may be mitigated by subsequent testing in follow-up studies (Cheng and Phillips, 2014, p. 374). Frequency tables and cross-tabulations of all variables included in the primary analysis were reproduced. The secondary analysis of existing data was conducted from the design variables used in the original study and applied in the secondary analyses to generate less biased estimates (Lohr, 2010; Graubard and Korn, 1996). Inclusion criteria for each intervention group, PTSS scores and exposure duration, were inherited from the primary analysis, to allow for strategic judgment about the coding of the core variables pertaining to AAC and PTSS. The data sample from 460 respondents was reduced to a non-ABA group of n=330. An external statistician scored each respondent, and interrater reliability was assessed using Cohen’s κ coefficient (κ=1). Practical implications Including the autistic voice in the long-term planning of childhood interventions is essential to those attempting to meet the needs of the individuals, their families and communities. Both parents and autistic participant quotes were obtained directly from the optional comments to reveal why parents quit or persisted with an autism intervention. Social implications Practitioners and intervention service providers must consider this feedback from those who are directly impacted by the intervention style, frequency or intensity. The need for such work is confirmed in the recent literature as well, such as community-based participatory research (Raymaker, 2016). Autistics should be recognized as experts in their own experience (Milton, 2014). Community–academic partnerships are necessary to investigate the needs of the autistic population (Meza et al., 2016). Originality/value Most autistic people do not consider autism to be a mental illness nor a behavior disorder. It is imperative to recognize that when injurious behavior persists, and disturbance in mood, cognition, sleep pattern and focus are exacerbated, the symptoms are unrelated to autism and closely align to the diagnostic criteria for posttraumatic stress disorder (PTSD). When PTSD is underdiagnosed and untreated, the autistic individual may experience hyperarousal and become triggered by otherwise agreeable stimuli. Since autism interventions are typically structured around high contact, prolonged hours and 1:1 engagement, the nature of the intervention must be re-evaluated as a potentially traumatic event for an autistic person in the hyperarousal state. Any interventions which trigger more than it helps should be avoided and discontinued when PTSS emerge.
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来源期刊
Advances in Autism
Advances in Autism PSYCHOLOGY, DEVELOPMENTAL-
CiteScore
2.30
自引率
0.00%
发文量
13
期刊介绍: Advances in Autism is unique in its focus on the health and care aspects and outcomes for people with autism. The journal''s content is international in focus and peer-reviewed. It includes the following: research-based articles evidence-based clinical and support articles articles on policy and advances in services where these can be internationally applied. Key areas of research covered include: clinical developments people''s experience through qualitative research policy debates and outcomes inclusion and quality of life developmental issues population and epidemiological studies services developments evidence-based reviews of key practice issues.
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