Talk:Cortical visual impairment

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I've made some changes to the External website and Reading Section

Added books: Updated Christine Roman-Lantzy's book to second edition and added her Advanced Principles book. Added Dr. Gordon Dutton's Vision and the Brain.

Updated links: Added Perkins CVI Now link, Pediatric Cortical Visual Impairment Society link, and Paths to Literacy links. Put description on existing Little Bear link.

Removed the dead link to APH Family Connect as it appears to no longer exist. I wasn't able to find a new link or the service at all anymore.

A few questions about content

march 17, 2021 - User niallabrown

I'm new to Wikipedia Editing and still learning. Apologies if I disrupted anything and thank you for accepting the changes to the resource books. I will look into how to format the links better as suggested.

I've noticed a few areas on the Cortical Visual Impairment Page that are getting outdated. Is there any objection to me making smore more current statements with references? I may also be able to back up some of the exiting content with more recent references. I noticed a few are referencing one pagers or unreliable links from quite a few years ago.

I was wondering about the overall format. For instance would it be clearer to move some of the bullets from 'Symptoms' to make a section called 'The Visual and Behavioral characteristics of CVI?'

The characteristics of CVI differ depending on who is being cited. For instance of the two of the major researchers who hold a lot of weight on the topic at the moment... Dr. Gordon Dutton (Cerebral focus) has a different list of characteristics from Christine Roman (Cortical Focus - who bases her list of 10 on Dr. James Jan's Research). From my understanding this is mainly because the two labels are district for a reason, however there is no Cerebral Visual Impairment Wiki, the umbrella term that encompasses more brain-based visual disorders. Confusingly both Cerebral visual Impairment and Cortical Visual Impairment have the acronym (CVI) and both mean similar things. The point of Cortical Visual Impairment to my understanding was to define a more refined set of visual and Behavioural characteristics which assisted professionals in determining what interventions may be best to address the condition.

Based on some research I did in 2020, I believe the current status of that discussion is:

(in my words) Cortical Visual Impairment is a “subset of cerebral visual impairment” (Roman-Lantzy, 2018. p. 10). This subset encompasses “the posterior visual system [which] is the region of the brain that includes the areas beyond the lateral geniculate nucleus; it includes the optic radiations and the visual cortex” (Roman-Lantzy, 2018. p. 9). Dr. Jan suggests that the purpose of defining Cortical Visual Impairment under a separate label is a way of making the term useful by linking “special medical and educational management” (Jan, 2011) to the child’s intervention plan related to these areas of brain disfunction.

Dr. James E. Jan, the pediatric neurologist who first described the 'ten characteristics' of Cortical Visual Impairment believed that the term Cerebral Visual Impairment encompasses too many different types of neurological problems to be a useful term. (Jan, 2011). In other words, Cerebral is an umbrella that may be better off as it's own page (being the umbrella term for Cortical Visual Impairment) or on this page as a section. This is also supported in the American Federation for the Blind article, ‘Windows into the Visual Brain’ which says that “facial recognition difficulties, cortical visual impairment, dyslexia and disorders of eye movements and visual attention” (Jan et al., 2013) may all fit under the broad term of Cerebral Visual Impairment. Making it difficult to link this term to particular services or interventions.

References:

Roman-Lantzy, C. (2018). Cortical Visual Impairment: An Approach to Assessment and Intervention (2nd ed.). New York, NY: AFB Press, American Foundation for the Blind

Jan, J.E. (2011). Cortical Visual Impairment is not the same as Cerebral Visual Impairment. Journal of Visual Impairment & Blindness. Retrieved from: https://www.thefreelibrary.com/Cortical+visual+impairment+is+not+the+same+as+cerebral+visual...-a0249684290

Jan, J.E., Heaven, R.K.B., Matsuba, C., Langley, M.B., Roman-Lantzy, C., and Anthony, T.L. (July-Aug, 2013). Windows into the Visual Brain: New Discoveries About the Visual System, It’s functions, and Implications for Practitioners. Journal of Visual Impairment & Blindness. Retrieved from 2020 https://journals.sagepub.com/doi/abs/10.1177/0145482X1310700402

The article that gave rise to the original Cortical Visual Impairment Characteristics that became the 10 Characteristics was this: Jan, J.E., Groenveld M., Sykanda A.M., Hoyt, C.S. (1987). Behavioral Characteristics of Children with Permanent Visual Impairment. Developmental Medicine & Child Neurology, 29: 571-576.

Of the original work I can only pick out 'Visual Latency' and 'Atypical Visual' reflexes that are missing from it. The other 8 are present from this research and evolved into the current list from Dr. Christine Roman-Lantzy.

The Pediatric Cortical Visual Impairment Society has an updated list based on Roman-Lantzy's work Here. These include:

• Color Preference
• Need for Movement
• Visual Latency
• Visual Field Preferences
• Difficulties with Visual Complexity

(Complexity of patterns on surface of objects, Complexity of Visual Array, Complexity of Sensory Environment, Complexity of elements of Human Faces)

• Need for Light
• Difficulty With Distance Viewing
• Atypical Visual Reflexes
• Difficulty With Visual Novelty
• Absence of Visually Guided Reach

As descried in:

Roman-Lantzy, C. (2018). Cortical Visual Impairment: An Approach to Assessment and Intervention (2nd ed.). New York, NY: AFB Press, American Foundation for the Blind

Dr. Gordon Dutton has some very valuable incite and many complex lists of behavioral characteristics. But the context is very complicated and it would take pages to include them all. For instance characteristics and how they related to mimicking symptoms of Autism or ADHD, or long lists of specific case examples of impacts to visual search or orientation to a an environment. To try to capture all of this Cortical Visual Impairment information and all of the Cerebral Visual Impairment one one page, or one bullet list is likely to become quite disorganized and decontextualized. Would it be possible to have two pages or at least have a split off section to lay out these characteristics clearly to make the page more functional?

What I would consider proposing is some sort of explanation of this distinction, then break out sections.

Does this make sense, and if so is there anyone who would like to collaborate on looking into this further with me and determining a logical format? — Preceding unsigned comment added by Niallabrown (talk • contribs)

@Niallabrown: Yes, please edit! I wrote the original version way back in 2006 by describing my own experience as a person with CVI and then I went on a hunt for references to back up what I'd already written. I knew "write first, find sources after" is a flawed approach: there are going to be differences across cases, so my personal experience is not going to be the same as everybody else with CVI. But I wanted to get the article started in the hope that others will improve it. This is because I had been rather rudely alerted to the increasing popularity of Wikipedia by a student on a mailing list who was attacking a minority that I had just defended by quoting Britannica. He found a sentence in a Wikipedia "criticism" section that said they were considered a "threat to national security", the context was a small historical misunderstanding in Singapore but out of context it made people think of 9-11. Well I didn't go to edit that article (thankfully, others have cleaned it up since then), but I thought I can at least start an article about my disability. I was fully hoping other editors would say "that's not quite how we do it, let's fix this" which would result in a better article. Well there have been some welcome contributions from other editors, but not the major rewrite I was hoping for. Dr Dutton himself saw it and kindly emailed me some of his papers, but I wasn't sure I really understood these as much as a medic would, so I put them into a "Further Reading" section instead of working them into the article properly; again I was hoping other editors with better medical experience would help to pick this up. I'd really like to see more good edits! (And please don't be put off if you quickly get reverted without explanation. There are admins out there trying to fight vandalism and other issues, who just occasionally, in the middle of a super battle against 1,000+ bad edits, accidentally revert a good edit. Generally, if I get reverted for a wrong reason I assume my reverter made an honest mistake so I redo my edit with a little more explanation to show it's not the bad edit they thought it was, and if I get reverted a second time and still don't understand why then I try the Talk page.) Silas S. Brown (email, talk) 10:32, 18 March 2021 (UTC)

@Silas S. Brown: Wonderful. I will do my best, time allowing to look at it while learning this confusing world of wiki editing. It may take some time but I will try to chip away at it once I learn some basics like how the edits process works and how to properly link citations, etc. There is a lot of good information on the page already, but I'll see if I can rework it or break off some particular areas to expand on. It's not easy to determine how to do that because there is still debate happing on these terms. A lot of people (I suspect possibly one of the largest groups) visiting the wiki are parent with a recent diagnosis for their child, so I am also very aware that being inclusive of all ages and abilities is a complex task. I appreciate all of the background you provided about the wikis history and hope you will keep an eye if I make changes, since there are many perspectives and nuances on the topic. My bias is as a vision consultant for young children and students, with some experience with adults who have complex multiple disabilities and CVI. I think it would take many points of view and experiences to make a full picture. From the medical aspect, to early intervention supports, to educational models and adaptations, to actual lived experiences few professionals would know to add. It's a complex topic. I see it as bigger than medical. I've also tried to get people together to discuss the topic on reddit (r/CVICommunity), but getting it off the ground has been difficult. Thanks you for all your tips! — Preceding unsigned comment added by Niallabrown (talk • contribs)

Please have a read of WP:MEDRS, sourcing requirements for medical content on Wikipedia are different (and more stringent) than for other sorts of topics. - MrOllie (talk) 17:52, 18 March 2021 (UTC)

@MrOllie:

Thank you MrOllie for linking to these requirements, I will review them. --Niallabrown (talk) 01:04, 19 March 2021 (UTC)