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Rachel Haine-Schlagel; Christina Corsello; Barbara Caplan; Hilary Gould; Lauren Brookman-Frazee – Journal of Autism and Developmental Disorders, 2024
Families of children with autism spectrum disorder (ASD) face challenges engaging in services following diagnosis. This study: (1) developed and implemented a toolkit to tailor ASD evaluation feedback to families' needs, and (2) evaluated caregiver and provider perceptions of the toolkit. Focus groups with providers (N = 11) informed toolkit…
Descriptors: Autism Spectrum Disorders, Clinical Diagnosis, Diagnostic Tests, Parent Attitudes
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Amy S. Weitlauf; Alexandra Miceli; Alison Vehorn; Yewande Dada; Theodora Pinnock; Joyce W. Harris; Jeffrey Hine; Zachary Warren – Journal of Autism and Developmental Disorders, 2024
Purpose: Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children. Methods: We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective…
Descriptors: Autism Spectrum Disorders, Minority Groups, African American Family, Barriers
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Sinead O'Neill; Grainne M. O'Donnell – Autism: The International Journal of Research and Practice, 2024
Our goal was to systematically identify, appraise and synthesise the qualitative research on parents' experiences of the autism assessment process. The empirical studies were quality appraised using the Critical Appraisal Skills Programme tool. We synthesised the data using a meta-synthesis approach. Parents' experiences were categorised into four…
Descriptors: Disability Identification, Autism Spectrum Disorders, Parents, Experience
Carmen Tontillo – ProQuest LLC, 2021
Since the mid-90s, the number of children treated for bipolar disorder has increased considerably. As a result, the diagnosis was considered more closely, and the DSM-5 proposed a new diagnosis: Disruptive Mood Dysregulation Disorder (DMDD). This is a relatively new diagnosis in the psychological community, causing a lack of agreement on treatment…
Descriptors: Mental Disorders, Clinical Diagnosis, Parent Attitudes, Intervention
Marion A. Clough – ProQuest LLC, 2024
Visual impairment affects an estimated 19 million children under 15 globally, with 12 million of them having vision issues that could be diagnosed and corrected, leaving 7 million children under 15 with significant visual impairments (WHO, 2021). The impact of receiving a visual impairment diagnosis can affect many aspects of a caregiver's life…
Descriptors: Children, Visual Impairments, Quality of Life, Anxiety
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Tomris, Gozde; Celik, Secil; Diken, Ibrahim Halil; Akemoglu, Yusuf – Infants and Young Children, 2022
Perceptions of parents of young children receiving early intervention are important to understand. Parents have valuable opinions on the delivery of early interventions services and can provide critical feedback that can help professionals revise their existing early intervention delivery modalities. In the current study, we examined the…
Descriptors: Parent Attitudes, Down Syndrome, Early Intervention, Foreign Countries
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Robert Klitzman; Ekaterina Bezborodko; Wendy K. Chung; Paul S. Appelbaum – Journal of Autism and Developmental Disorders, 2025
To assess whether genetic test results identifying the cause of a child's autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving…
Descriptors: Genetic Disorders, Screening Tests, Autism Spectrum Disorders, Neurodevelopmental Disorders
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Adam W. McCrimmon; Shawna M. Gray – Review Journal of Autism and Developmental Disorders, 2021
Diagnostic assessment for autism spectrum disorder (ASD) is a complex and often stressful process for parents. This systematic review synthesized results of 26 articles that reported on factors related to parental (dis)satisfaction with the diagnostic process for ASD. The results are described in terms of factors related to satisfaction and those…
Descriptors: Autism Spectrum Disorders, Identification, Clinical Diagnosis, Diagnostic Tests
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MacKenzie, Kristen T.; Mazefsky, Carla A.; Eack, Shaun M. – Journal of Autism and Developmental Disorders, 2023
Obtaining an autism spectrum disorder (ASD) diagnosis is often challenging for parents. The purpose of this study was to better understand this process and examine how elements of the process may influence parent satisfaction. A total of 406 parents of autistic children participated. Participants were administered a survey covering the ASD…
Descriptors: Parent Attitudes, Parent Child Relationship, Autism Spectrum Disorders, Clinical Diagnosis
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Almog, Nitsan; Kassel, Orit; Levy, Nili; Gabai, Tamir – Journal of Autism and Developmental Disorders, 2023
The diagnosis of autism is often delivered solely to the parents, a practice that forces them to confront the dilemma of whether, when and how they should disclose it to the child. The present study seeks to probe deeper into the phenomenon of diagnosis disclosure and lead to a clearer understanding of the dilemmas parents? face. This article…
Descriptors: Clinical Diagnosis, Autism Spectrum Disorders, Parent Attitudes, Disclosure
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Ramappa, Sapna; Anderson, Ariana; Jung, Jiwon; Chu, Robyn; Cummings, Kaitlin K.; Patterson, Genevieve; Okada, Nana J.; Green, Shulamite A. – Journal of Autism and Developmental Disorders, 2023
Sensory features are common and impairing in autism spectrum disorder (ASD), but there are few observational sensory assessments that are valid across ages. We used the Sensory Processing 3-Dimensional (SP3-D) observed Assessment and parent-reported Inventory to examine sensory responsivity in 41 ASD and 33 typically-developing (TD) youth across…
Descriptors: Autism Spectrum Disorders, Perceptual Impairments, Sensory Experience, Children
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Callyn Farrell; Virginia Slaughter; Tomomi McAuliffe; Aisling Mulvihill – Journal of Autism and Developmental Disorders, 2024
Participation in Organised Extracurricular Social Activities (OESA) can provide positive outcomes for children. This study investigated whether children aged 4 to 12 years diagnosed with autism differ in their OESA participation and experience compared to neurotypical peers. Parents of autistic children (n = 35) and those of neurotypical peers (n…
Descriptors: Extracurricular Activities, Autism Spectrum Disorders, Elementary School Students, Clinical Diagnosis
Georgia R. Cordy – ProQuest LLC, 2022
The prevalence of autism spectrum disorder (ASD) in the United States has been increasing over the years. In the United States, the children of African American parents are more likely to suffer from the consequences of their child having autism spectrum disorder as opposed to non-African American parents. African American children with ASD could…
Descriptors: African Americans, Parents, Children, Autism Spectrum Disorders
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Mc Grane, Fiona; Lynn, Fiona; Balfe, Joanne; Molloy, Eleanor; Marsh, Lynne – Journal of Intellectual Disabilities, 2023
Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this…
Descriptors: Foreign Countries, Down Syndrome, Parent Attitudes, Clinical Diagnosis
Jordyn Abrahams – ProQuest LLC, 2023
Mothers of adolescent girls diagnosed with an eating disorder often face the difficult task of deciding when and how to disclose their child's diagnosis to others. When doing so, they must consider their adolescent's right to privacy and the potential stigmatization associated with disclosure. Consequently, mothers may be hesitant to share their…
Descriptors: Eating Disorders, School Personnel, Mothers, Disclosure
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