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Where do we go from here: The need for studied on the education of children with Optic Nerve Hypoplasia is vital and urgent

Mar 28, 2023 at 12:51 pm by Christopher

Though the numbers of children with Optic Nerve Hypoplasia, Septo Optic Dysplasia, and related conditions continue to increase, there is still a lack of evidence-based knowledge regarding strategies of teaching many of our children, integrating us into the community, and enabling us to achieve successful employment. Since 2005, ONH consulting has provided guidance, referrals, individualized consultation, and advocacy services to many families in the United States and internationally and served as one of only a handful of resources designed to support our unique and specialized needs.

Despite this, very little research has been undertaken concerning our unique developmental, educational, and psychosocial profile. The characteristics of many of our children make socialization, academic instruction, and transition to adulthood a complex and sometimes daunting process. Blind children must learn a variety of specialized skills, including Braille, orientation and mobility, assistive technology, and daily living skills that enable them to achieve successful, productive lives. There are also a host of other, less tangible skills, including social interaction, self-management, self-advocacy, and maintenance of one's appearance that are just as vital--if not more so--to positive educational, social, and vocational outcomes for our children. Educational curricula and community experiences for children with and without disabilities alike typically emphasize academic and social achievement, positive peer interaction, social status, and a person's general worth in the overall capitalist economy.

Children with Optic Nerve Hypoplasia and related conditions are often isolated from their peers for a variety of reasons. Many children with ONH often gravitate toward adult interactions, and peers often find communicating with children with ONH difficult if not impossible. This is often because children with ONH and Autism characteristics operate on very different developmental trajectories than their more typically oriented peers, even those who are blind or visually impaired. Our very perceptions of the world around us may be fundamentally different from others due to limited vision and differences in how we process and interpret information from our senses.

Many children with ONH develop musical abilities, language skills and auditory processing abilities long before more age-appropriate skills emerge. This is particularly true of many self-care tasks that involve fine or gross motor coordination, such as writing, using kitchen utensils, or shoe tying, Sports, a mainstay of a child's ability to interact with their peers, can be difficult, impossible, or aversive for some children with ONH, though others may excel in some areas of physical activity, such as running, swimming or martial arts.

Sleep disturbances, the effects of medical complications such as Pituitary deficiency, and sensory overload can make learning, interacting, and exploring the environment a tedious, arduous, and often frustrating ordeal. However, it is those very skills which educators, employers, and society at large prize most highly.
Children with ONH are therefore, in all too many cases doubly disadvantaged; we face obstacles of lack of access to educational materials, proper training and instruction, low expectations, and outright discriminatory attitudes based on blindness and visual impairment. Our characteristics often serve to reinforce these negative attitudes and reinforce low expectations and distorted views of our abilities and potential.

With the complex sensory needs and resulting behavioral difficulties we often face on a constant basis, many children with ONH are happiest when allowed to withdraw to their own world, engaging in often solitary areas of interest, obsessions, or self-stimulatory behaviors. In perhaps the only study of its kind assessing the experiences of family members raising children with ONH published in 2021 as a doctoral dissertation at the university of Northern Colorado, Educator Amber Rundle-Kahn found that family members generally had high expectations for their children. However, a salient finding of her study was that parents viewed the home environment as a setting where children have the opportunity to spend time alone and engage in more preferred activities that enabled them to process and cope with their environment outside of the immediate context of home. Conversely, the demands of a typical school or workday can sap the energy of even the most well-developed and successful student with Optic Nerve Hypoplasia at any level. Though statistics regarding educational employment for these children are nonexistent, it has been my observation that the vast majority require placement in a specialized or alternative education program at some point in primary or secondary education. Many do not graduate from a regular high school or vocational / technical school program, and fewer go on to achieve competitive employment or complete post-secondary education.

Though data on educational and career outcomes of adults with ONH are nonexistent, I know that I am one of only a handful of adults with Autism characteristics who have graduated from high school and college and worked in a professional setting. Many require alternative secondary educational programs, as a regular school setting is too demanding or overwhelming for them. Many others are placed in segregated school settings due to false, negative perceptions of their abilities, limited staffing and accommodations, or sometimes, outright institutional prejudice. the need for a systematic, comprehensive, evidence-based review of best practices for promoting positive educational, vocational, and social outcomes for children with Optic Nerve Hypoplasia is vital and urgent.

What little information exists regarding best practices for supporting children with Optic Nerve Hypoplasia comes from anecdotal reports from families, professionals, and adults living with ONH who are able to share their experiences on social media, specialized publications related to health and disability issues, blogs, and other media content. Since children with ONH typically represent a subset of blind children, itself a low-incidence population, finding an adequate population of children to study is difficult at best. Only a handful of states in the United States have registries of blind children, let alone children with ONH.

Despite these challenges, no organization has taken the initiative to study ONH is a subset of the population of blind children, despite evidence from the professional literature that its incidence has increased dramatically over the past fifteen years. Where ONH was once considered a rare condition, impacting only 1 in 400 children in 1980, it is currently one of the three leading causes of blindness and visual impairment. Though there are a handful of organizations that are studying this condition from the perspective of etiology, secondary medical complications such as Pituitary dysfunction, and incidents of Autism Spectrum Disorders, there has been no concerted effort to translate the current knowledge base into evidence based practice for regular and special education teachers and other professionals. This, I believe, is essential for educators and related service professionals to develop strategies to promote high expectations and achievement for children with ONH.

Sections: Adult Perspectives