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For Adolescents with Optic Nerve Hypoplasia, Transition Can Be Fraught with Comlications

Dec 31, 2022 at 02:57 pm by Christopher

Though adolescents can be a difficult and stressful time for anyone regardless of disability, students with disabilities face a set of unique challenges as they transition to vocational training, college, or work after high school. For many children with Optic Nerve Hypoplasia, transitioning to adulthood can be especially fraught with complications.

Self-advocacy, Executive Functioning, and overall social interaction and communication skills are critical to the success of children and adolescents with disabilities preparing for life after high school. Yet, for many children with ONH, these skills tend not to be their strong suits. Children with ONH tend to be most secure in highly structured, predictable environments with immediate access to supports, such as teachers, school paraprofessionals, health care providers, and family members. We also have a real tendency to engage in activities that are inherently egocentric without much regard to the needs, interest, or impact of our behavior on others. Directing attention away from a specialized area of interest can be difficult if not impossible at times. Less structured environments, particularly peer interactions, can be stressful and problematic for many children with ONH.

Though our general understanding of the characteristics of blind children with additional disabilities is moving forward, professionals and families still attribute many characteristics of children with ONH to blindness or visual impairment. Educators, health care providers, and families often leave the responsibility of intervention and training for children with ONH to vision professionals. However, in some cases, blindness or visual impairment is not the child's primary disability.

Though Autism Spectrum Disorders, learning disabilities, or communication disorders often present the most significant challenges for many children with ONH, diagnosing an Autism Spectrum Disorder or learning disability in a blind or visually impaired child is problematic, as most of the instruments assessing these disabilities are not reliable for children who are visually impaired. There is also no best practice for the education of children with ONH, let alone transition.

Children with ONH-or others operating on the Autism Spectrum--may have real difficulty learning and assimilating the needs, desires, or perspectives of others. This is sometimes referred to as the hidden curriculum. They may be able to articulate that they have to conform to norms and expectations set by their boss, their employer, their employee's organizational culture, and society at large. However, putting this into practice may be something else entirely.

For example, one of my clients who was beginning the transition process expressed a desire to work in a bakery in a state more than two thousand miles away from her community. She had little to no experience in the kitchen and had never visited the state where she planned to work. Diagnosed with a communication disorder by a speech / language therapist, she also made comments during an evaluation that would be very problematic on a job toward specific minority groups.

I expressed an interest in working as an executive for a major long distance telephone carrier when I was in junior high, because, at the time, my all-encompassing area of interest was the sounds of the telephone network. My interest excluded other aspects of serving the operations of a major telephone company, such as travel, communicating with customers and management, problem-solving and conflict resolution, or indeed, nearly anything unrelated to how different telephone connections sounded.

This, I believe, is an aspect missing from most transition curricula. Most guides to planning for life after work for youth with disabilities simply focus on helping students identify their strengths, abilities, interests, and goals for the future. From my perspective, as an adult with ONH who went through the transition process and had to reevaluate his life goals after working for five years, this can be easier said than done.

For the child with routines, repetitive behaviors, and rigid, narrowly defined interests, thinking realistically about a life plan and career goals can be like swimming against a riptide. It is fairly typical for a child, adolescent, or young adult with ONH to fixate on one particular setting or aspect of a job that aligns with their interests and resist seeing the panoply of skills necessary to perform that job. This can stem from a basic inability to self-regulate effectively enough to think clearly about another's perspective, alternative views of the adolescent's situation, or, in some cases, objective reality. For the person with ONH, areas of interest or a specific view of reality can be highly intense, all-encompassing, and difficult to redirect.

From my own experience, making mature, reasoned choices regarding life goals and transition to adulthood (or any other life decision) can be so difficult in ONH because the etiology of ONH has neurological ramifications. The very ability to control one's thoughts, impulses, and immediate desires effectively enough to consider the positive and negative consequences of a job, career or living arrangements can be impacted. The person's ability to use adequate judgement, reasoning, and regard for others' perspectives may be limited or even nonexistent. This is sometimes referred to as theory of mind.

When considering career arrangements, relationships, or other crucial life decisions, the person with ONH might consider one aspect of a situation and fail to see the larger picture. I once received a call from the mother of a young adult with low vision and ONH who relocated from a suburbs of a major city in the Northeastern United States with good family support to a small Southern city, because a web site indicated that it had the cheapest housing in the country. He was unemployed and could not drive, he had no friends and family in the new city, and transportation and adequate health care that would meet his specific medical needs there were nearly nonexistent.

Many children with ONH learn the traditional skills of blindness, including orientation, mobility and travel skills, Braille, assistive technology, and daily living and home management skills in addition to self-advocacy and self-determination as part of the Expanded Core Curriculum for blind students. From my own experience, many organizations for the blind and blindness professionals strongly emphasize self-advocacy, the rights to accommodations, and the difference between the child-oriented system and adult services. Just as fundamental, however, are soft skills such as problem-solving, self-regulation, punctuality, and basic organizational skills like time management and attention to personal space. Some of these skills represent challenges for some children with ONH, blindness, or Autism characteristics or nonverbal learning disabilities, including me. In my case, I remember spending up to eighty percent of my time focusing on maintaining control and thinking about the appropriateness of my decisions and still faced occasional difficulties.

Children and adolescents with ONH, or indeed, blindness or low vision combined with learning disabilities or an autism spectrum disorder, often face a twofold challenge concerning the development of crucial soft skills. Congenitally blind children generally need explicit instruction in many basic social norms and rules that typically sighted children learn through natural experience. Children operating on the Autism Spectrum often have the same difficulty reading, interpreting, and acting on the full range of social cues. Ability to read body language, facial expression, or tone of voice can be compromised or even nonexistent. For some adolescents with both disabilities, the challenges are multiplied. In other words, many children with ONH are doubly blind. We face the challenges of blindness or low vision, but we are also blind or have low vision to  the views and perspectives of others and the impact of our behaviors on others. In the Autism community, this is sometimes referred to as "mind blindness.

Blind adults in the adult world--both with and without disabilities--must interact with a wide variety of people as part of their daily lives, from peers to professional colleagues and family members. Blind adults in college or work must interact with employers, transportation and health care providers, and vocational counselors and other professionals just to meet their basic needs. In today's working world, blind people must interact competently with people from a wide variety of cultural, ethnic, and socioeconomic backgrounds, many of whom have limited or no contact with a person who is blind or has low vision or views of blind people based on stereotypes. Use of certain types of assistive technology, particularly guide dogs, can also have cultural implications.

For blind adolescents, the road to adulthood can often be convoluted and fraught with detours, bottlenecks and occasionally, outright hazards. Limited availability of accommodations, inaccessible technology, and sometimes outright discrimination are typical in the lives of adults and transition-aged youth with many types of disabilities, blindness among them. For those with ONH, these challenges can be multiplied, requiring specialized support at times.

In my case, stress from these challenges and others accumulated and ultimately resulted in an emergence of some problematic behaviors, increased alcohol use, a job termination, and ultimately, my leaving the social work profession after five-and-a-half years.

Mentoring, adult role models, and a strong, cohesive team of individuals with an in-depth knowledge of the person's values, strengths, weaknesses, and needed supports is essential to the successful transition of most adolescents with disabilities, and ONH is no exception. Students need to approach the task of planning their vocational, living, health care, and relationship goals with infinite flexibility, and a respect for the perspectives of others. These are the attributes most valued by employers and the most likely to yield success on the job and in life in general. However, these are the very attributes that are the most confounding and challenging for many children with ONH and require the most support, patience, and flexibility for all involved.

Sections: Adult Perspectives