{"title":"Book review of Kids Across the Spectrums: Growing Up Autistic in the Digital Age","authors":"David Chun Yin Li","doi":"10.1108/aia-01-2024-078","DOIUrl":"https://doi.org/10.1108/aia-01-2024-078","url":null,"abstract":"","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139841336","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-12DOI: 10.1108/aia-04-2023-0018
Arielle S. Ramey, Vanessa R. Rainey, Samantha R. Seals
Purpose A chaotic home environment, marked by disorganization, noise and a lack of routine, has negative associations with language development, social competence and executive functioning. This study aims to investigate the mediating effect of chaotic homes on adaptive behaviors, or behaviors that allow independent functioning, in children diagnosed with autism spectrum disorder (ASD) compared to neurotypical (NT) children. Children with ASD have difficulties with adaptive functioning in their environment, and identifying factors in the home that may exacerbate these behaviors will help in understanding the larger family dynamics that may affect behavior. Design/methodology/approach In total, 251 primary caregivers completed questionnaires about their children’s adaptive behavior and the structure of the home environment. Findings The results of a mediation analysis found a significant indirect effect of ASD status leading to lower adaptive behaviors through home chaos. This suggests those with ASD experienced more household chaos than NT children, which influenced their lower adaptive behavior scores. Originality/value This research provides insights into the complex relationship between the home environment and child behavior in children with ASD.
目的 混乱的家庭环境以杂乱无章、嘈杂和缺乏规律为特征，与语言发展、社交能力和执行功能有负面关联。本研究旨在调查混乱的家庭环境对自闭症谱系障碍（ASD）儿童的适应行为（即能够独立发挥作用的行为）的中介作用。患有自闭症谱系障碍的儿童在适应环境方面存在困难，确定可能会加剧这些行为的家庭因素将有助于了解可能会影响行为的更大的家庭动态。这表明 ASD 儿童比 NT 儿童经历了更多的家庭混乱，从而影响了他们较低的适应行为得分。
{"title":"Home organization and adaptive behavior in children with autism spectrum disorder","authors":"Arielle S. Ramey, Vanessa R. Rainey, Samantha R. Seals","doi":"10.1108/aia-04-2023-0018","DOIUrl":"https://doi.org/10.1108/aia-04-2023-0018","url":null,"abstract":"\u0000Purpose\u0000A chaotic home environment, marked by disorganization, noise and a lack of routine, has negative associations with language development, social competence and executive functioning. This study aims to investigate the mediating effect of chaotic homes on adaptive behaviors, or behaviors that allow independent functioning, in children diagnosed with autism spectrum disorder (ASD) compared to neurotypical (NT) children. Children with ASD have difficulties with adaptive functioning in their environment, and identifying factors in the home that may exacerbate these behaviors will help in understanding the larger family dynamics that may affect behavior.\u0000\u0000\u0000Design/methodology/approach\u0000In total, 251 primary caregivers completed questionnaires about their children’s adaptive behavior and the structure of the home environment.\u0000\u0000\u0000Findings\u0000The results of a mediation analysis found a significant indirect effect of ASD status leading to lower adaptive behaviors through home chaos. This suggests those with ASD experienced more household chaos than NT children, which influenced their lower adaptive behavior scores.\u0000\u0000\u0000Originality/value\u0000This research provides insights into the complex relationship between the home environment and child behavior in children with ASD.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139844144","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-12DOI: 10.1108/aia-04-2023-0018
Arielle S. Ramey, Vanessa R. Rainey, Samantha R. Seals
Purpose A chaotic home environment, marked by disorganization, noise and a lack of routine, has negative associations with language development, social competence and executive functioning. This study aims to investigate the mediating effect of chaotic homes on adaptive behaviors, or behaviors that allow independent functioning, in children diagnosed with autism spectrum disorder (ASD) compared to neurotypical (NT) children. Children with ASD have difficulties with adaptive functioning in their environment, and identifying factors in the home that may exacerbate these behaviors will help in understanding the larger family dynamics that may affect behavior. Design/methodology/approach In total, 251 primary caregivers completed questionnaires about their children’s adaptive behavior and the structure of the home environment. Findings The results of a mediation analysis found a significant indirect effect of ASD status leading to lower adaptive behaviors through home chaos. This suggests those with ASD experienced more household chaos than NT children, which influenced their lower adaptive behavior scores. Originality/value This research provides insights into the complex relationship between the home environment and child behavior in children with ASD.
目的 混乱的家庭环境以杂乱无章、嘈杂和缺乏规律为特征，与语言发展、社交能力和执行功能有负面关联。本研究旨在调查混乱的家庭环境对自闭症谱系障碍（ASD）儿童的适应行为（即能够独立发挥作用的行为）的中介作用。患有自闭症谱系障碍的儿童在适应环境方面存在困难，确定可能会加剧这些行为的家庭因素将有助于了解可能会影响行为的更大的家庭动态。这表明 ASD 儿童比 NT 儿童经历了更多的家庭混乱，从而影响了他们较低的适应行为得分。
{"title":"Home organization and adaptive behavior in children with autism spectrum disorder","authors":"Arielle S. Ramey, Vanessa R. Rainey, Samantha R. Seals","doi":"10.1108/aia-04-2023-0018","DOIUrl":"https://doi.org/10.1108/aia-04-2023-0018","url":null,"abstract":"\u0000Purpose\u0000A chaotic home environment, marked by disorganization, noise and a lack of routine, has negative associations with language development, social competence and executive functioning. This study aims to investigate the mediating effect of chaotic homes on adaptive behaviors, or behaviors that allow independent functioning, in children diagnosed with autism spectrum disorder (ASD) compared to neurotypical (NT) children. Children with ASD have difficulties with adaptive functioning in their environment, and identifying factors in the home that may exacerbate these behaviors will help in understanding the larger family dynamics that may affect behavior.\u0000\u0000\u0000Design/methodology/approach\u0000In total, 251 primary caregivers completed questionnaires about their children’s adaptive behavior and the structure of the home environment.\u0000\u0000\u0000Findings\u0000The results of a mediation analysis found a significant indirect effect of ASD status leading to lower adaptive behaviors through home chaos. This suggests those with ASD experienced more household chaos than NT children, which influenced their lower adaptive behavior scores.\u0000\u0000\u0000Originality/value\u0000This research provides insights into the complex relationship between the home environment and child behavior in children with ASD.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139784454","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-22DOI: 10.1108/aia-05-2023-0021
Matthew David Phillips, Rhian Parham, K. Hunt, Jake Camp
Purpose Autism spectrum conditions (ASC) and borderline personality disorder (BPD) have overlapping symptom profiles. Dialectical behaviour therapy (DBT) is an established treatment for self-harm and BPD, but little research has investigated the outcomes of DBT for ASC populations. This exploratory service evaluation aims to investigate the outcomes of a comprehensive DBT programme for adolescents with a diagnosis of emerging BPD and a co-occurring ASC diagnosis as compared to those without an ASC diagnosis. Design/methodology/approach Differences from the start to end of treatment in the frequency of self-harming behaviours, BPD symptoms, emotion dysregulation, depression, anxiety, the number of A&E attendances and inpatient bed days, education and work status, and treatment non-completion rates were analysed for those with an ASC diagnosis, and compared between those with an ASC diagnosis and those without. Findings Significant medium to large reductions in self-harming behaviours, BPD symptoms, emotion dysregulation and inpatient bed days were found for those with an ASC diagnosis by the end of treatment. There were no significant differences between those with an ASC and those without in any outcome or in non-completion rates. These findings indicate that DBT may be a useful treatment model for those with an ASC diagnosis, though all results are preliminary and require replication. Originality/value To the best of the authors’ knowledge, this is the first study to report the outcomes of a comprehensive DBT programme for adolescents with an ASC diagnosis, and to compare the changes in outcomes between those with a diagnosis and those without.
{"title":"Dialectical behaviour therapy outcomes for adolescents with autism spectrum conditions compared to those without: findings from a seven-year service evaluation","authors":"Matthew David Phillips, Rhian Parham, K. Hunt, Jake Camp","doi":"10.1108/aia-05-2023-0021","DOIUrl":"https://doi.org/10.1108/aia-05-2023-0021","url":null,"abstract":"\u0000Purpose\u0000Autism spectrum conditions (ASC) and borderline personality disorder (BPD) have overlapping symptom profiles. Dialectical behaviour therapy (DBT) is an established treatment for self-harm and BPD, but little research has investigated the outcomes of DBT for ASC populations. This exploratory service evaluation aims to investigate the outcomes of a comprehensive DBT programme for adolescents with a diagnosis of emerging BPD and a co-occurring ASC diagnosis as compared to those without an ASC diagnosis.\u0000\u0000\u0000Design/methodology/approach\u0000Differences from the start to end of treatment in the frequency of self-harming behaviours, BPD symptoms, emotion dysregulation, depression, anxiety, the number of A&E attendances and inpatient bed days, education and work status, and treatment non-completion rates were analysed for those with an ASC diagnosis, and compared between those with an ASC diagnosis and those without.\u0000\u0000\u0000Findings\u0000Significant medium to large reductions in self-harming behaviours, BPD symptoms, emotion dysregulation and inpatient bed days were found for those with an ASC diagnosis by the end of treatment. There were no significant differences between those with an ASC and those without in any outcome or in non-completion rates. These findings indicate that DBT may be a useful treatment model for those with an ASC diagnosis, though all results are preliminary and require replication.\u0000\u0000\u0000Originality/value\u0000To the best of the authors’ knowledge, this is the first study to report the outcomes of a comprehensive DBT programme for adolescents with an ASC diagnosis, and to compare the changes in outcomes between those with a diagnosis and those without.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139608845","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-17DOI: 10.1108/aia-02-2023-0008
Daisy Grace Burden
Purpose Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process. Design/methodology/approach In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes. Findings The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives. Practical implications These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK. Originality/value Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.
目的 对子女进行自闭症评估的家长通常会认为评估过程压力极大。这影响了家长在诊断后参与服务的方式，这意味着尽管他们努力应对，但使用后续服务支持的可能性较低。由于家长们已经报告了获得服务的许多障碍，如漫长的等候名单、缺乏协调和资源有限（Sapiets et al. 2023），评估过程中的负面经历不应该成为参与服务的另一个潜在障碍。本研究旨在探讨如何在评估过程中更好地满足家庭的需求。在这项定性研究中，作者对 11 位家长进行了半结构化访谈，他们的孩子在过去五年中接受了自闭症评估。研究结果六个主题分别是：清晰度和沟通、获得支持和资源、后续护理、认识到家长的顾虑、评估过程的个性化以及对使用个人保护设备/在线评估的顾虑。根据这些主题，我们制定了符合家长观点的自闭症评估服务质量评估标准。原创性/价值先前的研究表明，自闭症评估的经历往往给家庭带来极大的压力和压迫感（Crane 等人，2016 年）。尽管如此，改善自闭症服务的指南很少优先考虑服务使用者及其家庭的意见和经验。本文所介绍的标准是通过采访家长在自闭症评估过程中的经历而确定的主题，从而将重点转移到服务使用者身上。
{"title":"“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process","authors":"Daisy Grace Burden","doi":"10.1108/aia-02-2023-0008","DOIUrl":"https://doi.org/10.1108/aia-02-2023-0008","url":null,"abstract":"\u0000Purpose\u0000Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process.\u0000\u0000\u0000Design/methodology/approach\u0000In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes.\u0000\u0000\u0000Findings\u0000The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives.\u0000\u0000\u0000Practical implications\u0000These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK.\u0000\u0000\u0000Originality/value\u0000Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139527535","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-01-08DOI: 10.1108/aia-07-2023-0040
Omniah AlQahtani, M. Efstratopoulou
Purpose Identifying autism spectrum disorder (ASD) in children’s early years significantly impacts their academic performance and future life. It allows them to receive special support services and the required early intervention. Preschool teachers spend considerable time with their students, which allows them to observe their behaviors in different settings like classrooms and playgrounds. However, teachers need to be knowledgeable of ASD early assessment to detect them. Whereas, all well-known ASD assessment tools are designed for populations from different cultures than the Gulf Cooperation Councils' (GCC) culture. This study emphasizes the importance of preschool age, from 3 to 5, in indicating children's early signs of ASD. This paper aims to indicate the early signs of ASD in preschool children in the UAE as a model for other GCC countries. Design/methodology/approach A qualitative method consisting of interviews with preschool teachers and the ASD children’s parents was conducted to investigate the ASD early symptoms in children. Findings The findings of the study show that there is a direct connection between the opinions expressed by preschool teachers and the parents of children with ASD (Autism Spectrum Disorder). These results also highlight the presence of early indications of ASD among preschool-aged children in the United Arab Emirates, such as difficulties in communication, repetitive actions, delayed speech, excessive focus on tablets, trouble paying attention, hyperactivity, sleep problems, and aggressive behavior. Originality/value The outcomes suggest a strong connection between the feedback from preschool teachers and the parents of children with ASD. The study uncovers initial indications of ASD in preschool-aged children from the United Arab Emirates, such as difficulties in communication, repetitive actions, delayed speech, excessive fascination with tablets, problems with attention, hyperactivity, sleep disturbances, and aggressive behavior.
{"title":"Investigating the early signs of ASD in preschool children in the UAE as a model for GCC countries","authors":"Omniah AlQahtani, M. Efstratopoulou","doi":"10.1108/aia-07-2023-0040","DOIUrl":"https://doi.org/10.1108/aia-07-2023-0040","url":null,"abstract":"\u0000Purpose\u0000Identifying autism spectrum disorder (ASD) in children’s early years significantly impacts their academic performance and future life. It allows them to receive special support services and the required early intervention. Preschool teachers spend considerable time with their students, which allows them to observe their behaviors in different settings like classrooms and playgrounds. However, teachers need to be knowledgeable of ASD early assessment to detect them. Whereas, all well-known ASD assessment tools are designed for populations from different cultures than the Gulf Cooperation Councils' (GCC) culture. This study emphasizes the importance of preschool age, from 3 to 5, in indicating children's early signs of ASD. This paper aims to indicate the early signs of ASD in preschool children in the UAE as a model for other GCC countries.\u0000\u0000\u0000Design/methodology/approach\u0000A qualitative method consisting of interviews with preschool teachers and the ASD children’s parents was conducted to investigate the ASD early symptoms in children.\u0000\u0000\u0000Findings\u0000The findings of the study show that there is a direct connection between the opinions expressed by preschool teachers and the parents of children with ASD (Autism Spectrum Disorder). These results also highlight the presence of early indications of ASD among preschool-aged children in the United Arab Emirates, such as difficulties in communication, repetitive actions, delayed speech, excessive focus on tablets, trouble paying attention, hyperactivity, sleep problems, and aggressive behavior.\u0000\u0000\u0000Originality/value\u0000The outcomes suggest a strong connection between the feedback from preschool teachers and the parents of children with ASD. The study uncovers initial indications of ASD in preschool-aged children from the United Arab Emirates, such as difficulties in communication, repetitive actions, delayed speech, excessive fascination with tablets, problems with attention, hyperactivity, sleep disturbances, and aggressive behavior.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139379924","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose Autistic individuals are at increased risk of trauma exposure and post-traumatic stress disorder (PTSD). Diagnostic overshadowing, however, often results in PTSD symptoms being mislabelled as autistic traits. This study aims to develop professional consensus on the identification and assessment of co-occurring PTSD in autistic adults. Design/methodology/approach An online modified Delphi design was used to gather professionals’ perspectives on key aspects of the identification and assessment of PTSD in autistic adults. Data were gathered qualitatively in Round 1 and then synthesised using content analysis into a list of statements that were rated in Round 2. Statements reaching 60–79% consensus and additional suggestions were sent out for rating in Round 3. Consensus for the final statement list was set at 80% agreement. Findings Overall, 108 statements reached consensus. These form the basis of professional-informed recommendations to facilitate the identification and assessment of PTSD symptoms in autistic adults. Practical implications The final Delphi statements provide a framework to assist with the assessment and recognition of traumatic stress reactions in autistic adults presenting to mental health, diagnostic or social services. Originality/value To the best of the authors’ knowledge, this is the first study to explore the presentation and identification of PTSD in autistic adults (with and without intellectual disability), using a bottom-up approach informed by professional consensus.
{"title":"Elucidating the presentation and identification of PTSD in autistic adults: a modified Delphi study","authors":"Freya Rumball, Rachel Parker, Ailbhe Elizabeth Madigan, Francesca Happé, Debbie Spain","doi":"10.1108/aia-08-2023-0053","DOIUrl":"https://doi.org/10.1108/aia-08-2023-0053","url":null,"abstract":"\u0000Purpose\u0000Autistic individuals are at increased risk of trauma exposure and post-traumatic stress disorder (PTSD). Diagnostic overshadowing, however, often results in PTSD symptoms being mislabelled as autistic traits. This study aims to develop professional consensus on the identification and assessment of co-occurring PTSD in autistic adults.\u0000\u0000\u0000Design/methodology/approach\u0000An online modified Delphi design was used to gather professionals’ perspectives on key aspects of the identification and assessment of PTSD in autistic adults. Data were gathered qualitatively in Round 1 and then synthesised using content analysis into a list of statements that were rated in Round 2. Statements reaching 60–79% consensus and additional suggestions were sent out for rating in Round 3. Consensus for the final statement list was set at 80% agreement.\u0000\u0000\u0000Findings\u0000Overall, 108 statements reached consensus. These form the basis of professional-informed recommendations to facilitate the identification and assessment of PTSD symptoms in autistic adults.\u0000\u0000\u0000Practical implications\u0000The final Delphi statements provide a framework to assist with the assessment and recognition of traumatic stress reactions in autistic adults presenting to mental health, diagnostic or social services.\u0000\u0000\u0000Originality/value\u0000To the best of the authors’ knowledge, this is the first study to explore the presentation and identification of PTSD in autistic adults (with and without intellectual disability), using a bottom-up approach informed by professional consensus.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2023-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138951409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose This study aims to examine the impact that diagnostic factors such as duration of diagnostic period, number of professionals consulted and perceived social support have on parental stress during the diagnostic process of autism spectrum disorder (ASD). Design/methodology/approach Forty parents of 2–18 year-old children/adolescents with a formal ASD diagnosis recruited from five specialized private clinics in Lisbon completed a survey which included diagnostic questionnaire, parental stress scale and social support scale from April to December 2022. Findings Data analysis indicated that the mean age of the diagnosis was 5.6 years with a delay of 3.95 years from first concern until final diagnosis. On average, parents consulted a mean of 3.62 professionals. Other findings indicated that as age of parents increased, levels of parental stress decreased. Parents with higher levels of social support had lower levels of parental stress. Furthermore, higher age of child at first concern predicted higher affective social support. Originality/value This study reflects on the experience of obtaining the ASD diagnosis in Portugal, raising awareness on the importance of providing early detection and social support for distressed parents.
{"title":"Autism diagnosis experience and parental stress among Portuguese parents","authors":"Genta Kulari, Giulia Francisca Sarantakos Cordeiro","doi":"10.1108/aia-08-2023-0046","DOIUrl":"https://doi.org/10.1108/aia-08-2023-0046","url":null,"abstract":"Purpose This study aims to examine the impact that diagnostic factors such as duration of diagnostic period, number of professionals consulted and perceived social support have on parental stress during the diagnostic process of autism spectrum disorder (ASD). Design/methodology/approach Forty parents of 2–18 year-old children/adolescents with a formal ASD diagnosis recruited from five specialized private clinics in Lisbon completed a survey which included diagnostic questionnaire, parental stress scale and social support scale from April to December 2022. Findings Data analysis indicated that the mean age of the diagnosis was 5.6 years with a delay of 3.95 years from first concern until final diagnosis. On average, parents consulted a mean of 3.62 professionals. Other findings indicated that as age of parents increased, levels of parental stress decreased. Parents with higher levels of social support had lower levels of parental stress. Furthermore, higher age of child at first concern predicted higher affective social support. Originality/value This study reflects on the experience of obtaining the ASD diagnosis in Portugal, raising awareness on the importance of providing early detection and social support for distressed parents.","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135808595","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-08-22DOI: 10.1108/aia-06-2022-0032
A. Mirahmadizadeh, A. Heiran, H. Nemati, Shiva Aminnia, F. Azadian, F. Rezaei, R. Sahebi, A. Miyar, Mohammad Hossein Sharifi, Mojgan Tavasoli
Purpose Children and adolescents with autism spectrum disorder need special attention for their mental and physical health and education. This study aims to investigate the effects of the COVID-19 pandemic on them. Design/methodology/approach This descriptive cross-sectional study was conducted on data collected from an online survey. Respondents were the parents or caregivers of autistic children aged 3–18. It measured opinions about the favorable and unfavorable behavioral changes related to their children during the COVID-19 lockdowns. Findings In total, 131 respondents participated in the study. The mean age of their autistic children was 11.45 ± 4.26 years, of whom 78% were boys. Improved good behaviors during lockdowns included interaction with parents and siblings, eating healthy foods, quality of sleep, eye contact, pointing and asking for something, imitating sounds and phrases, sharing interests, reaction to emotions and empathy with family members, but sleep hours decreased. Originality/value Lockdown provided opportunities for examining the behaviors of children with autism taking into account its favorable and unfavorable effects, to improve communicating and behaving with these children.
{"title":"Effects of the COVID-19 lockdowns on the care delivery to the children with autism spectrum disorder: a web-based cross-sectional study","authors":"A. Mirahmadizadeh, A. Heiran, H. Nemati, Shiva Aminnia, F. Azadian, F. Rezaei, R. Sahebi, A. Miyar, Mohammad Hossein Sharifi, Mojgan Tavasoli","doi":"10.1108/aia-06-2022-0032","DOIUrl":"https://doi.org/10.1108/aia-06-2022-0032","url":null,"abstract":"\u0000Purpose\u0000Children and adolescents with autism spectrum disorder need special attention for their mental and physical health and education. This study aims to investigate the effects of the COVID-19 pandemic on them.\u0000\u0000\u0000Design/methodology/approach\u0000This descriptive cross-sectional study was conducted on data collected from an online survey. Respondents were the parents or caregivers of autistic children aged 3–18. It measured opinions about the favorable and unfavorable behavioral changes related to their children during the COVID-19 lockdowns.\u0000\u0000\u0000Findings\u0000In total, 131 respondents participated in the study. The mean age of their autistic children was 11.45 ± 4.26 years, of whom 78% were boys. Improved good behaviors during lockdowns included interaction with parents and siblings, eating healthy foods, quality of sleep, eye contact, pointing and asking for something, imitating sounds and phrases, sharing interests, reaction to emotions and empathy with family members, but sleep hours decreased.\u0000\u0000\u0000Originality/value\u0000Lockdown provided opportunities for examining the behaviors of children with autism taking into account its favorable and unfavorable effects, to improve communicating and behaving with these children.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2023-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48527409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-08-08DOI: 10.1108/aia-12-2022-0057
A. Osuna, Daina M. Tagavi, Katie Sabini, Ty W. Vernon
Purpose The purpose of this paper is to describe the development and pilot of a novel program to support autistic adults with social media use. Social media use among autistic adults has been associated with increased happiness and closer friendships. However, autistic adults are at risk of social media challenges such as cyber-victimization. To date, no programs exist that specifically support autistic adults with safe and effective social media use. The primary aim of this study was to develop and pilot test a novel social media skills program for feasibility and acceptability. A secondary aim was to explore changes in Facebook activity as a proxy for online social engagement. Design/methodology/approach The socialization, education and learning for the internet (SELFI) program was developed by identifying relevant target skills, goals, considerations and evidence-based strategies to help autistic adults with online social communication. The developed SELFI program was then pilot tested with six autistic male young adults to explore initial feasibility (fidelity of delivery, attendance) and acceptability (attrition, enjoyment and programmatic feedback). Facebook data were collected to explore differences in the frequency of likes/reactions, comments and posts after completion of the program. Findings Each participant completed all procedures and attended every session. There was no attrition from the program. The average fidelity score for recorded sessions was 85.1%. Most participants endorsed agreement with program enjoyment and that it helped them maintain current relationships. Participant feedback provided valuable information regarding areas of strength and areas that needed improvement. Each participant who completed the study demonstrated increased Facebook engagement across likes/reactions, comments and posts. Research limitations/implications Limitations include a small all-male sample, exclusion of adults with intellectual disabilities and adolescents and dependence on Facebook data. Additionally, the developed program did not incorporate feedback from relevant stakeholders, including autistic adults. Originality/value To the best of the authors’ knowledge, this is one of the first studies to explore support for autistic adults specifically related to social media use.
{"title":"Socialization, education and learning for the internet (SELFI): development and pilot of a social media skills program for autistic adults","authors":"A. Osuna, Daina M. Tagavi, Katie Sabini, Ty W. Vernon","doi":"10.1108/aia-12-2022-0057","DOIUrl":"https://doi.org/10.1108/aia-12-2022-0057","url":null,"abstract":"\u0000Purpose\u0000The purpose of this paper is to describe the development and pilot of a novel program to support autistic adults with social media use. Social media use among autistic adults has been associated with increased happiness and closer friendships. However, autistic adults are at risk of social media challenges such as cyber-victimization. To date, no programs exist that specifically support autistic adults with safe and effective social media use. The primary aim of this study was to develop and pilot test a novel social media skills program for feasibility and acceptability. A secondary aim was to explore changes in Facebook activity as a proxy for online social engagement.\u0000\u0000\u0000Design/methodology/approach\u0000The socialization, education and learning for the internet (SELFI) program was developed by identifying relevant target skills, goals, considerations and evidence-based strategies to help autistic adults with online social communication. The developed SELFI program was then pilot tested with six autistic male young adults to explore initial feasibility (fidelity of delivery, attendance) and acceptability (attrition, enjoyment and programmatic feedback). Facebook data were collected to explore differences in the frequency of likes/reactions, comments and posts after completion of the program.\u0000\u0000\u0000Findings\u0000Each participant completed all procedures and attended every session. There was no attrition from the program. The average fidelity score for recorded sessions was 85.1%. Most participants endorsed agreement with program enjoyment and that it helped them maintain current relationships. Participant feedback provided valuable information regarding areas of strength and areas that needed improvement. Each participant who completed the study demonstrated increased Facebook engagement across likes/reactions, comments and posts.\u0000\u0000\u0000Research limitations/implications\u0000Limitations include a small all-male sample, exclusion of adults with intellectual disabilities and adolescents and dependence on Facebook data. Additionally, the developed program did not incorporate feedback from relevant stakeholders, including autistic adults.\u0000\u0000\u0000Originality/value\u0000To the best of the authors’ knowledge, this is one of the first studies to explore support for autistic adults specifically related to social media use.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2023-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42653356","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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