On The Outside Looking In: A Phenomenological Study of The Lived Experience of Australian Adults With A Disorder of The Corpus Callosum

Abstract

Background While classified as a rare condition, a congenital disorder of the corpus callosum (DCC) is one of the most commonly identified brain anomalies in newborns, occurring in 1 :4000 live births. Advances in imaging techniques have improved early diagnosis for children, yet adults with a DCC – who may present with extreme heterogeneity in cause and impact - often experience challenges in receiving a definitive diagnosis and accessing appropriate services and supports. To date, the dearth of evidence documenting the lived experiences of adults with DCC has made it difficult to determine adequate policy and service responses. This exploratory research aims to address this gap by presenting the first qualitative examination of the experiences and impact of complete or partial agenesis of the corpus callosum among adults. ResultsEight face-to-face interviews were conducted with Australian adults, aged 23 to 72 years, to explore their lived experience. Data was collected in four Australian states from June to August 2017. Thematic and interpretive analyses were employed to analyse data. Three emergent themes described difficulties related to; 1) Reactions to the diagnosis; 2) Access to supports and key life domains, and 3) Identifying as an adult. Interview analysis described lived experiences typically outlining a lifetime of exclusion and misunderstanding from family, educators and disability and health support services. ConclusionsThis paper contributes to filling the knowledge gap around a rare congenital brain disorder affecting the lives of adults. Findings confirm a considerable lack of information and support for adults living with corpus callosum disorders. Greater professional and societal understanding is needed to improve access to the key life domains of education, employment and social inclusion for adults with a DCC. To instigate truly effective change, social research must tackle the issues of applicability and impact to alter the dominance of uninformed practices, hindered by prevailing myths. This research paves the way for further phenomenological studies in which participant narrative is vital. Further research will elicit stronger policy and service responses for all current and emerging adults with a DCC.

Increased persuadability and credulity in people with corpus callosum dysgenesis

“…In this exploratory study we assessed the psychometric profile of those with CCD compared to NT participants. Motivated by prior work on the social difficulties reported in CCD 6,11,13,14,16 and high comorbidity of ASD in this population 18 , the focus of this work was on identifying any consistent psychometric differences that could not be explained by age, sex, education, poorer general cognitive ability, or autistic traits. It was determined that persuadability, insensitivity to noticing social trickery, credulity, trust, and autistic traits were significantly higher in those with CCD compared to NT populations following adjustment by Bayesian general linear models.…”

“…6 The covariance structure extracted from the dimension reduction suggests that those diagnosed with CCD are primarily typified by exaggerations in persuadability, credulity, and insensitivity to social trickery. Those with lived experienced of CCD have anecdotally reported their difficulties in understanding the social intentions of others, and it may be that a predisposition to be overly trusting has led some of those with CCD into abusive relationships or finding themselves being the target of antisocial behaviours, such as bullying 16 . More broadly, this highlights the necessity of having CCD recognised as a vulnerable group in healthcare policy so that adequate social and financial support can be arranged.…”

“…However, prior work has also found that after parent-rated assessments were included, many of the ASD scores in those with CCD were attenuated below the clinical threshold 19 . As qualitative work has identified the preference for many individuals with CCD to be alone because of negative social experience, such as ostracism, abuse, and social anxiety 16 , it may be that many of the autistic-like qualities that the sAQ aims to measure are confounded by these learnt social responses following social exclusion, rather than CCD sharing many biologically causal links with ASD. Indeed, we find that even after controlling for ASD-like traits and social intelligence, is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint…”

“…This includes social insight, social logic, and self-perception 11,13,14 as well as deficits in inference relating to first-and second order beliefs 14 and in the interpretation of social intentions 6 . Indeed, difficulties in relationships and navigating the social world have been identified as a critical source of distress in those with a diagnosis of CCD 16 .…”