Autonomous driving paper index
Children With Cerebellar Malformations and Co-Occurring Autism: A Phenomenological Study Exploring Challenges Faced With the Dual Diagnosis Process, Service Acquisition, and Psychosocial Impacts
One-line summary
Parents of children who have been diagnosed with cerebellar malformations, such as Dandy-Walker Malformation, often face confusion and frustration as they are given uncertain prognoses about their child’s future.
Engineering notes
Key topics: autonomous driving. See the paper for implementation details and experimental results.
Chinese explanation / 中文解读
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Original abstract
Parents of children who have been diagnosed with cerebellar malformations, such as Dandy-Walker Malformation, often face confusion and frustration as they are given uncertain prognoses about their child’s future. The uncertainty is further compounded when there are concerns for autism spectrum disorder (ASD), and testing is sought, with conflicting answers on whether their child has autism or not. Acquisition of autism-specialty services may be delayed if a diagnosis of autism is not received in a timely manner. The purpose of this interpretive phenomenological study was to understand the lived experiences and challenges faced by parents of children with cerebellar malformations who are subsequently diagnosed with co-occurring ASD. Specifically, the study found that the parent participants experienced similar challenges, leading to six themes including fear, self-education, missed and delayed diagnoses, a need to advocate for their children when there were barriers with therapeutic service acquisition , isolation, and “a-ha moments” in which clarity occurred. This phenomenological study adds to the literature with its groundbreaking exploration of the lived experiences of parents whose children have received diagnoses of both cerebellar malformations and ASD. Reducing delays in qualification for ABA therapy by acknowledging the cerebellar and autism link is a good first step. Improving systems access for those with cerebellar malformations who do not yet have an autism diagnosis could be achieved by adding a categorization indicating “Very high likelihood of ASD”, which could be an area of future inquiry. Ultimately, the goal is to improve long-term outcomes in this unique population through future research.
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