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Direct linkNag, Heidi Elisabeth; Hoxmark, Lise Beate; Naerland, Terje – Journal of Intellectual Disabilities, 2019
The experience of having a rare disorder was summarised in a large study as 'falling outside the vast field of knowledge of the professionals'. Parents (31 mothers and 17 fathers) of 32 persons with Smith-Magenis syndrome (SMS) participated in this study. A phenomenological approach was used to analyse the data into topics and themes. Four themes…
Descriptors: Genetic Disorders, Intellectual Disability, Behavior Problems, Parents
Knüppel, Ane; Telléus, Gry Kjaersdam; Jakobsen, Helle; Lauritsen, Marlene Briciet – Journal of Autism and Developmental Disorders, 2019
Daytime activity, in terms of engagement in an occupation or education, is highly important for individuals with autism spectrum disorder (ASD), regardless of their level of functioning. In this nationwide survey, the parents of young adults diagnosed with ASD in childhood (n = 1266) provided information about the current daytime activity of their…
Descriptors: Young Adults, Autism, Pervasive Developmental Disorders, Parents
