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Sunday, December 14, 2014

Transitions: Higher Education and Health Care

Valérie Van Hees, Tinneke Moyson, Herbert Roeyers have an article in The Journal of Autism and Developmental Disorders titled "Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs." Thee study took place in Flanders, Belgium, but the reactions are universal.  The abstract:
The transition into higher education constitutes a precarious life stage for students with autism spectrum disorder (ASD). Research on how students with ASD navigate college life is needed for the development of adequate support. This study investigated the challenges and support needs of 23 students with ASD in higher education through semi-structured interviews. Data were analyzed following the principles of Grounded Theory. Students faced difficulties with new situations and unexpected changes, social relationships, problems with information processing and time management and had doubts about disclosure. Facing these challenges simultaneously in the domains of education, student life and daily (independent) living, had a major impact on students’ well being. Besides these challenges, students also reported benefits that contributed to success in the three domains. They pointed out to a set of recommendations for support. These findings are linked with previous research and implications for higher education institutions are extrapolated on the basis of these findings.
This quotation from a student points out the dilemma for parents -- worldwide -- who have been scrupulous in providing structure for their ASD kids.
I think starting working later on could be a problem. I have always lived in a structure that was provided for me by others: infant school, elementary and secondary school, even in higher education. But after graduation, what will happen then? There will be no such structure. At that point everything will be new then, and open. I will have to organize my own life. That really frightens me. I could try to excel now and be a high performer at university. But once I will have finished my education, I fear that I will not know how to organize my life, and will end up with the beggars in the railway station. (David, aged 19, university)
Nancy C Cheak-Zamora and Michelle Teti have an article in Autism titled “`You Think It’s Hard Now … It Gets Much Harder For Our Children': Youth With Autism And Their Caregiver’s Perspectives Of Health Care Transition Services." The abstract:
Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.
This quotation from a parent inspired the title:
You think it’s hard now … It gets much, much harder for our children [after they turn 18] … They won’t even give you an idea who this next doctor is because they don’t know until your child is 18 … Our child had no chance to meet this person, no chance in a safe environment with their old doctor to get comfortable with the [new] doctor. Unfortunately [healthcare] kind of really sucks for our children.