scholarly journals Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders

2013 ◽  
Vol 15 (4) ◽  
pp. 274-281 ◽  
Author(s):  
Lei-Shih Chen ◽  
Lei Xu ◽  
Tse-Yang Huang ◽  
Shweta U. Dhar
Keyword(s):  
Autism Spectrum Disorders ◽  
Genetic Testing ◽  
Qualitative Study ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorders

scholarly journals 0748 Parent Satisfaction with Sleep Education Delivered by Community Therapists for Children with Autism Spectrum Disorders: A Qualitative Study

SLEEP ◽  
2019 ◽  
Vol 42 (Supplement_1) ◽  
pp. A300-A300
Author(s):  
Laura E Gray ◽  
Lydia L MacDonald ◽  
David G Schlundt ◽  
Kemberlee R Bonnett ◽  
Beth A Malow
Keyword(s):  
Autism Spectrum Disorders ◽  
Qualitative Study ◽  
Children With Autism ◽  
Parent Satisfaction ◽  
Autism Spectrum ◽  
Sleep Education ◽  
Spectrum Disorders

scholarly journals Genetic testing in children with autism spectrum disorders

2015 ◽  
Vol 16 (6) ◽  
pp. 426 ◽  
Author(s):  
Esra Cop ◽  
Pinar Yurtbasi ◽  
Ozgur Oner ◽  
Kerim Munir
Keyword(s):  
Autism Spectrum Disorders ◽  
Genetic Testing ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorders

Pursuing genetic testing for children with autism spectrum disorders: What do parents think?

2020 ◽  
Author(s):  
Shixi Zhao ◽  
Wei‐Ju Chen ◽  
Shweta U. Dhar ◽  
Tanya N. Eble ◽  
Oi‐Man Kwok ◽  
...  
Keyword(s):  
Autism Spectrum Disorders ◽  
Genetic Testing ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorders

Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders

Autism ◽  
2018 ◽  
Vol 23 (4) ◽  
pp. 902-909 ◽  
Author(s):  
Lei-Shih Chen ◽  
Jungkyung Min ◽  
Shixi Zhao ◽  
Yu-Chen Yeh ◽  
Tse-Yang Huang
Keyword(s):  
Autism Spectrum Disorders ◽  
Genetic Testing ◽  
Needs Assessment ◽  
Information Needs ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Educational Approach ◽  
Informed Decisions ◽  
Spectrum Disorders ◽  
Needs Assessment Survey

We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum disorders in 236 public elementary schools with special education services were invited to complete a survey. About two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority (71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed decisions-making. Moreover, to promote better communication between the providers and parents, when discussing genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders, healthcare professionals’ priorities should be in line with the preferred topics identified in this study.

Parental Perception and Participation in Genetic Testing Among Children With Autism Spectrum Disorders

2018 ◽  
Vol 57 (14) ◽  
pp. 1642-1655 ◽  
Author(s):  
John W. Harrington ◽  
Leonard Emuren ◽  
Kathryn Restaino ◽  
Samantha Schrier Vergano
Keyword(s):  
Autism Spectrum Disorders ◽  
Genetic Testing ◽  
Parental Involvement ◽  
Primary Care Physicians ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Parental Perception ◽  
Factors Associated ◽  
Children With Asd ◽  
Spectrum Disorders

The purpose of this study was to determine the factors associated with genetic testing in children with autism spectrum disorders (ASDs) and understand parental involvement in the decision to test using survey data of parents of children with ASD. Evaluation by a geneticist was associated with genetic testing by more than 39 times compared to evaluation by a nongeneticist (95% CI = 9.15-168.81). Those offered testing by the physicians were more than 6 times more likely to be tested than those not offered testing (95% CI = 1.66-24.61). Financial concerns, not being offered testing, and lack of awareness were the most consistent reasons for not testing given by participants. A physician’s recommendation for testing and an evaluation by a geneticist were the most important factors associated with genetic testing in children with ASD. Educating primary care physicians and nongenetic specialists can potentially improve genetic testing among children with ASD.

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