In understanding the challenges faced by adolescents with disabilities, it is important to recognize that for most adolescents, with or without disability, is a period of rapid and dramatic changes that present quite a number of challenges. This is a time of not only biological development, but also of significant cognitive, psychological and social change.1 It is a time of transition that prepares each young person for adult life. During these years, a number of developmental tasks are involved.

  • Developing a self-identity (including values, personality and sexual identity)
  • Reducing one’s physical, emotional and financial dependence on parents and caregivers
  • Developing social relationships (primarily with peers) through appropriate behaviour and communication skills

Starting to learn a vocation or other significant way of spending time2In the process of searching for, creating and defining identity, peer relationships become more important as familial connections recede to some degree. Among groups of peers, adolescents often “compare themselves to others, test and develop their roles, and interpret others’ impressions of their own identity.3” Identity helps to forge an understanding of the “complex relationship between individuals and society.”4

Adolescence and disability: growing up with spina bifida

Growing up with a physical disability can intensify these challenges for an adolescent and introduce new ones to his or her parents and caregivers.

The study found lower levels of participation, peer integration/social acceptance and academic aspirations among those teens with physical disabilities.

In a study of adolescents with disabilities in Toronto, Canada, it was found that while most shared many qualities with adolescents with no disabilities, including high self-esteem, strong familial relationships and a similar number of close friends, there were also significant differences. The study found lower levels of participation, peer integration/social acceptance and academic aspirations among those teens with physical disabilities.5

Furthermore, among families with non-disabled adolescents, these years of young adulthood are a time of decreasing dependence with both parents and their adolescents changing the focus of their lives and their own personal goals. For the parents or caregivers of adolescents with disabilities, however, this can be a time of even greater stress. Increased dependence and physical size in addition to lagging social, emotional and mental states can all contribute to greater challenges at home.6

Increased dependence and physical size in addition to lagging social, emotional and mental states can all contribute to greater challenges at home.

Box 1 | Spina Bifida

Spina bifida (meaning "split spine" in Latin) is a congenital condition resulting from an incomplete closure of the neural tube and nerve protrusion in the early stages of gestation (within 25 days from conception). The lumbar and sacral regions of the spine are the most commonly affected areas. While the cause is still unknown, heredity and environmental factors are thought to play a role. With the abnormal growth of the neural tube comes associated damage to the vertebrae and nerves, generally resulting in some degree of paralysis, loss of sensation, problems with bowel and bladder control, and in most cases hydrocephalus, a build-up of cerebrospinal fluid (CSF). The severity of problems varies from case to case.

There are two main types of spina bifida:

  1. Spina bifida occulta – a mild, common and “hidden” form that only rarely results in disability;
  2. Spina bifida cystica (cyst-like) – results in a small cyst on the back and includes two forms:
      1. Meningocele – here the cyst contains CSF and the spinal cord is covered; there is little nerve damage;
      2. Myelomeningocele – in this more common form, the cyst also involves parts of the spinal cord and results in paralysis. The term “spina bifida” most often refers to this form.

This last form – the myelomeningocele – results in a range of impairments in body functions and structures including loss of muscle tone, hip deformations and problems with bowel and bladder control. Additionally, there are limitations in activities that involve mobility of the lower extremities and assistive devices are often required. These impairments also contribute to restrictions in participation. Spina bifida may also have direct effects on the brain, causing certain cerebellar abnormalities known as Arnold Chiari II malformations. The cerebellum is the part of the lower brain that integrates sensory input and controls coordination and motor control, including maintaining balance. These defects can result in symptoms such as dizziness, weakness, problems with vision, headaches and difficulties with balance and coordination. Importantly, persons with spina bifida have normal intelligence, but may encounter learning disabilities.

Spina bifida is one of the most common birth defects. In the USA, for instance, there are estimated 4.6 cases per 10000 births. Interestingly, there are also differences along ethnic lines, with Hispanics having the highest rates of spina bifida and Asians the lowest. Notably, rates of spina bifida in the USA have been falling since 1930. From 1970 onwards, better screening, the older average age of mothers, and socioeconomic status may have played a role in the decline.

Although spina bifida can be surgically treated at birth, the damage to the nervous system is permanent and there is no cure at present. Although the reasons for spina bifida are as yet unknown, most cases are preventable through folic acid supplementation for the mother before and during pregnancy.

Spina bifida

Spina bifida is a congenital malformation of the central nervous system – specifically in spinal cord development where the neural tube does not fully close – that often results in paraplegia (see Box 1). It is one physical condition that results in a range of nervous system deficits affecting many body structures and functions, activities, and participation; together, these present adolescents with many challenges as they transition to adulthood.

For those born with spina bifida, survival rates beyond adolescence have improved due to better medical and surgical interventions, with recent estimates showing that 85-90% of those with spina bifida living into their adult years.However, as persons with spina bifida live through these years of transition in greater numbers, issues of dependence and social stigma present ever greater barriers to a higher quality of life.

For these young people, navigating the critical developmental stages and successfully acquiring the necessary skills to enter adulthood may prove problematic.

Indeed, beyond the physical and cognitive effects of the disease lay a range of psychosocial issues that may arise: concerns with body image, reduced self-esteem and isolation, as well as higher rates of social impairment and reduced educational achievement have all been documented. Teenagers with spina bifida also often experience teasing, bullying and difficulties forming friendships.

Navigating the critical developmental stages and successfully acquiring the necessary skills to enter adulthood may prove problematic.

Adolescent women with spina bifida “may find themselves in a socially devalued role and experience limited social interactions…with peers.” For many, there are signicant difficulties establishing relationships with both other peers and adults. Due to this isolation and, at times, its associated poor social competencies, dating also proves to be particularly complicated. This is in contrast to the common self-perception of adolescents with SB that they are “normal,” and their corresponding need to be treated by others as such.

Add to these challenges the problems faced from a health-care perspective: the transition of care to adult providers can introduce a number of other complications such as fewer support staff and social workers, as well as an assumption of greater responsibility on the side of the patient. For adolescents, adapting to spina bifida involves acquiring a range of skills necessary for development. These include:

      • Skills in physical health management to minimize secondary conditions and their effects;
      • Developing positive mental health;
      • Engaging in age-appropriate social activities;
      • Attaining academic success and a high quality of life.

Thus, transitional care programs must help promote and guide adolescents with SB in learning these skills, skills which are necessary for transitioning to adult life roles and greater independence (to whatever extent is possible based upon physical functioning). Comprehensive rehabilitation programs for adolescents must therefore address a complicated spectrum of “physical needs and developmental, social, economic, rehabilitative and mental health challenges to help youth adapt successfully.” In many if not all cases, a multidisciplinary approach is most appropriate to meeting this range of issues.

This case study aims to illustrate some specific challenges to independence and peer relationships for one adolescent living with spina bifida and show how these were addressed in a specific comprehensive rehabilitation program.