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The Quality of Everyday Eye Contact in Williams Syndrome: Insights From Cross-Syndrome Comparisons. 威廉姆斯综合症患者日常眼神交流的质量:来自交叉综合症比较的见解。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-07-01 DOI: 10.1352/1944-7558-127.4.293
Ellen Ridley, Bronia Arnott, Deborah M Riby, D Michael Burt, Mary Hanley, Susan R Leekam

Past research shows that individuals with Williams syndrome (WS) have heightened and prolonged eye contact. Using parent report measures, we examined not only the presence of eye contact but also its qualitative features. Study 1 included individuals with WS (n = 22, ages 6.0-36.3). Study 2 included children with different neurodevelopmental (ND) conditions (WS, autism spectrum condition, fragile X syndrome, attention-deficit/hyperactivity disorder) and children with neurotypical development (NT; n = 262, ages 4.0-17.11). Unusual eye contact features, including staring, were found in approximately half of the WS samples. However, other features such as brief glances were frequently found in WS and in all ND conditions, but not NT. Future research in ND conditions should focus on qualitative as well as quantitative features of eye contact.

过去的研究表明,患有威廉姆斯综合症(WS)的人有更多和更长时间的目光接触。使用家长报告测量,我们不仅检查了目光接触的存在,而且还检查了其定性特征。研究1纳入WS患者(n = 22,年龄6.0-36.3)。研究2包括不同神经发育(ND)状况(WS、自闭症谱系状况、脆性X综合征、注意缺陷/多动障碍)的儿童和神经典型发育(NT;N = 262,年龄4.0-17.11)。在大约一半的WS样本中发现了不寻常的眼神接触特征,包括凝视。然而,其他特征,如短暂的目光,在WS和所有ND条件下都经常被发现,但在NT条件下却没有。未来对ND条件的研究应侧重于眼神接触的定性和定量特征。
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引用次数: 2
A Systematic Review of Maintenance Measurement in Early Childhood Autism Spectrum Disorder Research. 儿童早期自闭症谱系障碍维持测量研究的系统综述。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-07-01 DOI: 10.1352/1944-7558-127.4.313
Elizabeth A Pokorski, Lauren M LeJeune

Single case research designs (SCRDs) are integral to identifying evidence-based practices (EBPs) for young children with autism spectrum disorder (ASD); however, the field lacks guidance on measuring response maintenance within SCRDs. We identified 103 studies in which researchers used SCRD to investigate the maintenance of behavioral intervention outcomes for children with ASD ages 0-5. Findings include: (a) maintenance conditions across most EBP categories, (b) limited within-case replication of maintenance assessment, (c) inconsistent use of maintenance terminology, (d) varying frequencies of maintenance assessment, and (e) wide range in latency to first and last maintenance probe. Results indicate a pressing need for the regular inclusion of maintenance conditions in behavioral research to increase our understanding of programming for and assessing maintenance.

单病例研究设计(SCRDs)是确定幼儿自闭症谱系障碍(ASD)的循证实践(ebp)的组成部分;然而,该领域缺乏在scrd内测量响应维持的指导。我们确定了103项研究,研究人员使用SCRD来调查0-5岁ASD儿童行为干预结果的维持情况。研究结果包括:(a)大多数EBP类别的维护条件,(b)维护评估的病例内复制有限,(c)维护术语的使用不一致,(d)维护评估的频率不同,以及(e)第一次和最后一次维护探测的延迟范围很大。结果表明,迫切需要在行为研究中定期纳入维护条件,以增加我们对维护规划和评估的理解。
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引用次数: 3
Emotional Lexicon in Down Syndrome. 唐氏综合症中的情感词汇。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-07-01 DOI: 10.1352/1944-7558-127.4.278
Christelle Declercq, Régis Pochon

We studied comprehension of emotion versus concrete/abstract words in Down syndrome (DS). Study 1 compared 26 participants with DS and 26 typically developing (TD) children matched on verbal ability. Results showed no difference between groups. Study 2 assessed whether chronological age (CA) and (non)verbal abilities predicted developmental trajectories of comprehension in 36 children with DS and 143 TD children. For the latter, these variables predicted comprehension of all three word types. For the former, receptive vocabulary predicted comprehension of all word types, but CA and nonverbal reasoning only predicted comprehension of concrete words. This suggests that people with DS have no specific emotional lexicon deficit. Supporting their general lexical development would help them access abstract and emotional meanings.

我们研究了唐氏综合症患者的情感理解与具体/抽象词语的关系。研究1比较了26名残疾儿童和26名语言能力匹配的正常发育儿童。结果显示各组间无差异。研究2评估了36名DS儿童和143名TD儿童的实足年龄(CA)和(非)语言能力是否预测了理解的发展轨迹。对于后者,这些变量预测了对所有三种单词类型的理解。对于前者,接受性词汇预测了对所有类型词汇的理解,而CA和非语言推理仅预测了对具体词汇的理解。这表明患有退行性痴呆的人没有特定的情感词汇缺陷。支持他们的一般词汇发展将帮助他们理解抽象和情感意义。
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引用次数: 1
COVID-19 and Persons With Intellectual and Developmental Disabilities: Implications for Future Policy, Practice, and Research. 2019冠状病毒病与智力和发育障碍者:对未来政策、实践和研究的影响。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-07-01 DOI: 10.1352/1944-7558-127.4.270
Amy S Hewitt, John G Smith, Liz Weintraub

The COVID-19 pandemic has been hard for everyone. For the estimated seven and a half million people in the United States who live with intellectual disability (Residential Information Systems Project, 2020), it has been very hard. Lives have been disrupted by lost jobs, lack of access to friends/family, and challenges finding enough staff to provide supports and needed healthcare. Studies have shown that people with IDD are at a much greater risk of getting COVID-19 and dying from it (Cuypers et al., 2020; Gleason et al., 2021; Kaye, 2021; Landes, Turk, & Ervin, 2020; Nygren & Lulinski, 2020). Without question, people with intellectual and developmental disabilities (IDD) struggled as the COVID-19 pandemic began and as it has continued. Too many were isolated from friends and family for far too long. Too many were lonely and bored. Too many have not received the support they have needed during the pandemic. Far too many were denied treatment and far too many have died. As a nation we must reflect on what has happened and listen to people with IDD and their families about their experiences. This commentary reflects on the implications of COVID-19 for research, policy, and practice through the lens of people with IDD.

COVID-19大流行对每个人来说都是艰难的。对于美国估计有750万智障人士来说(住宅信息系统项目,2020年),这是非常困难的。人们的生活因失业、无法与朋友/家人联系以及难以找到足够的工作人员来提供支持和所需的医疗服务而受到影响。研究表明,缺乏症患者感染COVID-19并因此死亡的风险要大得多(Cuypers等人,2020;Gleason等人,2021;凯,2021;兰德斯,特克和欧文,2020;Nygren & Lulinski, 2020)。毫无疑问,随着COVID-19大流行的开始和持续,智力和发育障碍者(IDD)一直在苦苦挣扎。太多的人与朋友和家人隔离太久了。太多的人感到孤独和无聊。太多的人没有得到他们在大流行期间所需的支持。太多的人得不到治疗,太多的人已经死亡。作为一个国家,我们必须反思所发生的事情,倾听缺碘症患者及其家人的经历。本评论从缺碘症患者的角度思考2019冠状病毒病对研究、政策和实践的影响。
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引用次数: 1
Resúmenes al Español. 英文摘要。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-05-31 DOI: 10.1352/1944-7558-121.5.463
J. Floyd, Catherine L. Costigan, Carly L. Blustein, Jennifer L. Bumble, Sarah Harvey, Lynnette M. Henderson
De muestras de tipo transversal (N 1⁄4 106) y longitudinal (N 1⁄4 35) de hermanos (edades 11-38) informaron sobre la cercanı́a y el conflicto en sus relaciones con los hermanos y hermanas con discapacidad intelectual. Por cercanı́a, la CFA distingue sentimientos de cercanı́a emocional de comportamientos de intercambio recı́proco de estos hermanos. Los efectos de la edad y los cambios en el tiempo indican el aumento emocional y una reducción general en los conflictos de la adolescencia a la edad adulta, con un intercambio recı́proco estable. En la muestra transversal, la cercanı́a fue mayor cuando los hermanos estaban involucrados en la prestación de cuidados, y el conflicto fue menor cuando los hermanos ya no residen juntos. La constelación de caracterı́sticas de hermanos (sexo, orden de nacimiento, el espaciamiento de edad) tiene efectos en este periodo de desarrollo limitado. Los resultados apoyan una combinación de cambios en el desarrollo de esperanza de vida y perdurable unión en estas relaciones entre hermanos.
样品类型(N 1⁄4 106)的横向和纵向(N 1⁄4 35)兄弟(年龄11-38)介绍了大体ı́和冲突的智障兄弟姐妹关系。a为大体ı́aoc区分大体的感情ı́到情感交流行为机制ı́proco这些兄弟。年龄的影响和天气的变化表明该情感增加和减少冲突一般在青春期到成年,交流机制ı́proco稳定。横向样本,大体ı́最高当兄弟们参与提供照料和冲突减少,当兄弟不再居住在一起。星座的性格ı́sticas兄弟(性别、出生顺序的间距,年龄)在这个发展阶段有明显影响有限。研究结果支持了预期寿命发展的变化和这些兄弟姐妹关系的持久结合。
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引用次数: 0
Change in Maladaptive Behavior Affects Intergenerational Relationships in Fragile X Syndrome. 适应不良行为的改变影响脆性X综合征的代际关系。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-05-01 DOI: 10.1352/1944-7558-127.3.231
Emily Lorang, Jinkuk Hong, Leann Smith DaWalt, Marsha Mailick

This study investigated the bidirectional effects of change in maladaptive behaviors among adolescents and adults with fragile X syndrome (FXS) and change in their intergenerational family relationships over a 7.5-year period. Indicators of the intergenerational family relationship between premutation carrier mothers and their adolescent or adult son/daughter with FXS included a measure of the quality of the relationship, as well as descriptions provided by mothers of their relationship with their son/daughter (positive remarks, critical remarks). Maladaptive behaviors decreased, maternal positive remarks increased, and maternal critical remarks and relationship quality remained stable over time. Bidirectional effects of change were observed in predicting maladaptive behaviors and maternal positive remarks, although maladaptive behaviors more strongly predicted positive remarks than the reciprocal association. This research suggests prioritizing maladaptive behaviors in the context of family interventions.

本研究在7.5年的时间里,探讨了青少年和成人脆性X综合征(FXS)患者适应不良行为的变化及其代际家庭关系的变化的双向影响。先兆携带者母亲与其患有FXS的青春期或成年儿子/女儿之间的代际家庭关系的指标包括对关系质量的衡量,以及母亲对其与儿子/女儿关系的描述(积极评论,批评评论)。随着时间的推移,适应不良行为减少,母亲的积极言论增加,母亲的批评言论和关系质量保持稳定。变化在预测适应不良行为和母亲正面评价方面存在双向效应,但适应不良行为对正面评价的预测作用强于相互作用。这项研究建议在家庭干预的背景下优先考虑适应不良行为。
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引用次数: 0
Attention/Deficit Hyperactivity Disorder in Adolescent and Young Adult Males With Fragile X Syndrome. 青少年和青年男性脆性 X 综合征患者的注意力/缺陷多动障碍。
IF 1.9 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-05-01 DOI: 10.1352/1944-7558-127.3.213
Jessica Klusek, Shannon L O'Connor, Alexandra Hickey, Kimberly J Hills, Leonard Abbeduto, Jane E Roberts

This study characterized the rates of attention-deficit/hyperactivity disorder (ADHD) in adolescent and young adult males with fragile X syndrome (FXS) using a multi-method approach integrating a DSM-based parent interview (Children's Interview for Psychiatric Syndromes; P-ChIPS, Fristad et al., 1998) and a parent rating scale (Child Behavior Checklist; CBCL, Achenbach, 2001). Thirty-one males with FXS, aged 16-24 years, participated. Forty-two percent met DSM-5 criteria for ADHD and 35% exceeded the CBCL cut-offs. Agreement between the two classification methods was fair (κ = 0.38). Autism symptom severity and nonverbal cognitive ability did not predict ADHD diagnoses/symptoms. Results show high rates of ADHD in males with FXS during late adolescence and young adulthood, which are not accounted for by impaired nonverbal cognitive skills or autism symptom severity. DSM-based ADHD-specific scales are recommended over broadband symptom scales to improve accurate identification.

本研究采用多种方法,综合了基于 DSM 的家长访谈(儿童精神综合征访谈;P-ChIPS,Fristad 等人,1998 年)和家长评分量表(儿童行为检查表;CBCL,Achenbach,2001 年),对患有脆性 X 综合征(FXS)的青少年和年轻成年男性的注意力缺陷/多动障碍(ADHD)发病率进行了描述。31 名患有 FXS 的男性参加了此次研究,他们的年龄在 16-24 岁之间。其中 42% 符合 DSM-5 多动症标准,35% 超过 CBCL 临界值。两种分类方法的一致性尚可(κ = 0.38)。自闭症症状严重程度和非语言认知能力并不能预测多动症的诊断/症状。研究结果表明,FXS 男性患者在青春后期和青年期的多动症发病率较高,而非语言认知能力受损或自闭症症状严重程度并不能解释这一点。建议使用基于DSM的ADHD特异性量表,而不是宽带症状量表,以提高识别的准确性。
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引用次数: 0
Relationship Between Sensory Processing and Autism Spectrum Disorder-Like Behaviors in Prader-Willi Syndrome. Prader-Willi综合征患者感觉加工与自闭症谱系障碍样行为的关系
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-04-20 DOI: 10.1352/1944-7558-127.3.249
Sohei Saima, H. Ihara, Hiroyuki Ogata, Masao Gito, N. Murakami, Y. Oto, Atsushi Ishii, Asami Takahashi, T. Nagai
The relationship between sensory processing and ASD-like and associated behaviors in patients with Prader-Willi Syndrome (PWS) remains relatively unexplored. Examining this relationship, 51 adults with PWS were administered the Pervasive Developmental Disorders Autism Society Japan Rating Scale (PARS), Short Sensory Profile (SSP-J), Food-Related Problem Questionnaire (FRPQ), and Aberrant Behavior Checklist (ABC-J). Based on SSP-J z-scores, participants were classified into three severity groups. Analysis of variance was performed to compare the behavioral scores of these three groups. Statistically significant group differences were observed in PARS (p = .006, ηp2 = .194) and ABC-J (p = .006, ηp2 = .193) scores. Our findings suggest that the level of sensory processing may predict ASD-like and aberrant behaviors in adults with PWS, implying the importance of a proper assessment for early intervention.
Prader-Willi综合征(PWS)患者的感觉加工与asd样行为及相关行为之间的关系仍相对未被探索。研究人员对51名成年PWS患者进行了广泛性发育障碍自闭症协会评定量表(PARS)、短感觉量表(SSP-J)、食物相关问题问卷(FRPQ)和异常行为量表(ABC-J)。根据SSP-J - z评分,将参与者分为三个严重程度组。对三组的行为评分进行方差分析比较。PARS评分(p = 0.006, ηp2 = 0.194)和ABC-J评分(p = 0.006, ηp2 = 0.193)组间差异有统计学意义。我们的研究结果表明,感觉加工水平可以预测成年PWS患者的asd样行为和异常行为,这意味着对早期干预进行适当评估的重要性。
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引用次数: 0
Interventions for Transition-Age Youth With Disabilities: A Meta-Analysis of Group Design Studies. 对残疾过渡年龄青年的干预:群体设计研究的元分析。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-04-20 DOI: 10.1352/1944-7558-127.3.169
S. Crowley
This meta-analytic review investigated interventions for transition-age youth diagnosed with autism, intellectual disability, or extensive support needs. Nineteen group design studies with 215 effect sizes met inclusion criteria. A robust variance estimation procedure that accounts for the clustering effect sizes within studies was used to synthesize effect sizes within each intervention and outcome type. Occupational Therapy/Physical Therapy interventions have significant and positive effects on gross motor outcomes (g = 0.73, p < 0.01). All remaining interventions and outcomes could not be synthesized due to a limited number of studies, but are further described in a narrative manner. Recommendations for future research include improving the methodological quality of intervention studies and further analyzing the effects of interventions for transition-age youth.
本荟萃分析综述调查了诊断为自闭症、智力残疾或广泛支持需求的过渡年龄青年的干预措施。有215个效应量的19个组设计研究符合纳入标准。考虑研究中的聚类效应大小的稳健方差估计程序用于综合每种干预措施和结果类型中的效应大小。职业治疗/物理治疗干预对大肌肉运动预后有显著的积极影响(g = 0.73, p < 0.01)。由于研究数量有限,无法综合所有剩余的干预措施和结果,但以叙述的方式进一步描述。对未来研究的建议包括提高干预研究的方法学质量和进一步分析干预对过渡年龄青年的影响。
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引用次数: 0
Down Syndrome Cures: Perspectives of People With Down Syndrome and Their Parents. 唐氏综合症的治疗:唐氏综合症患者及其父母的观点。
IF 2.1 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-04-20 DOI: 10.1352/1944-7558-127.3.194
Julie M G Rogers, A. Weaver, Rachel D. Havyer
Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35/171 (20.5%) self-advocates and 430/867 (49.6%) parents showed the majority of self-advocates were glad they have DS (27/35; 77.1%) and liked who they are (33/35; 94.3%), but did want to learn faster (23/35; 65.7%). Parents much more commonly agreed with a willingness to give medications to prevent Alzheimer's disease (427/429; 99.5%) or blood cancer (428/430; 99.5%) as compared with a medicine to cure DS (225/425; 52.9%). Qualitative comments intertwined DS with identity, yet indicated desire for improved quality of life and opportunities. Responses decoupled DS itself from the complications of DS, with treatment of complications being more acceptable.
唐氏综合症(DS)的研究进展迅速,但也引发了伦理问题。本混合方法研究描述了退行性痴呆患者及其父母对退行性痴呆医疗干预的看法。35/171(20.5%)的自我倡导者和430/867(49.6%)的自我倡导者的回答显示,大多数自我倡导者很高兴他们有DS (27/35;77.1%),喜欢自己的样子(33/35;94.3%),但确实想学得更快(23/35;65.7%)。父母更普遍同意给予药物预防阿尔茨海默病的意愿(427/429;99.5%)或血癌(428/430;99.5%)与治疗DS的药物相比(225/425;52.9%)。定性评论与身份交织在一起,但表明了对提高生活质量和机会的渴望。反应将退行性椎体滑移本身与退行性椎体滑移的并发症分离开来,并发症的治疗更容易被接受。
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引用次数: 0
期刊
Ajidd-American Journal on Intellectual and Developmental Disabilities
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