Albinism

Description

  • congenital (i.e. present at birth) and hereditary (i.e. inherited)
  • lack in the formation of pigment which can affect all the body’s pigmented structures (hair, skin and eyes) or just one
    • ocular albinism – eyes involvement only
    • oculocutaneous albinism – eyes, hair and skin involvement
  • the student with albinism usually has pale skin, pale eyes (blue or pink) and sandy or fair to white hair.
  • the lack of pigment and vision impairment varies from individual to individual
  • often associated with other vision impairments (e.g. nystagmus – a rhythmic oscillation of the eyes which is always present in infants with albinism; myopia – short sightedness)

Implications

  • with little or no pigment in the retina and iris, the eye is extremely photophobic (sensitive to light)
  • lack of pigment in the skin means that the skin, too, is sensitive to light and will burn easily
  • the macula of the eye is often poorly formed therefore central vision is impaired
  • with poor central vision, acuities can be low, so visual information may need to be magnified
  • nystagmus may be present to varying degrees
  • a squint (a turned eye/strabismus) may be present
  • most people with albinism also have refractive errors (i.e. the shape of the eye causes the image not to focus correctly on the retina)

Suggested teaching strategies

  • ensure that all staff working with the student, including replacement teachers and volunteers, are aware of the vision impairment and its educational implications.

Outdoors

  • dark or tinted glasses may be necessary to shield eyes from the light
  • sun hats can be useful both to shield the eyes from glare and the skin from the sun
  • students may be more comfortable wearing darker colours, especially on their upper body. Light coloured clothing may cause glare and discomfort especially when outside.
  • sun screen should be worn, even in the colder months; the student should carry sun screen and be encouraged to apply it as required
  • a pouch or shoulder bag may be required so that the student can carry their sun screen and other aids at all times
  • the teacher should keep the sun behind the student during teaching moments as bright light and glare will cause difficulties
  • larger balls with good contrast will assist
  • reading environmental signs e.g. street signs may cause difficulties

In the Classroom

  • teachers should be very careful that the student with albinism is never seated facing into light and that the nystagmus (where present) is taken into account
  • control of light, or more particularly glare, is important in the classroom during school hours. If too much light enters the room, blinds or artwork can be placed over windows. If light cannot be conveniently controlled, a ‘dark corner’ set up for the student to go if s/he chooses may be beneficial. Remember though that eyes need a certain level of light to function. A large umbrella can offer shade over a student’s desk, as required. A beach or golf umbrella could form part of a classroom theme.
  • the use of shiny surfaces (e.g. white boards, shiny paper for worksheets, laminated flashcards, shiny table tops) should be avoided as they can reflect light toward the student’s eyes
  • reading material may need to be modified e.g. etext for novels, textbooks and handouts; text-to-speech and/or magnification. For young students it may be sufficient to bring reading material close to the eyes.
  • utilise high contrast materials e.g. black texta for writing, coloured textas for drawing, coloured paste, using clear bold illustrations to cut around
  • bold lined paper may assist
  • always use a clean white board with black marker. Use a consistent layout when presenting information on a board e.g. homework is always found on the far right hand side of the board.
  • a reading/writing stand can often assist, especially in primary school or for prolonged visual tasks. The use of a reading/writing stand will also help to occlude light from the eyes.
  • for writing sheets or exercise books, recycled paper (creamy or grey coloured) may be better than pure white paper, but remember that contrast is also important
  • optical or electronic magnification may assist with near work. If using an electronic magnifier, students with albinism may prefer to read white print on a black background.
  • paper colour, print size and type of magnification will need to be assessed on an individual basis
  • students will benefit from desktop demonstrations ensuring visual access e.g. correct handwriting formation of a new letter, science experiment etc
  • efficient organisational skills will assist a student with a vision impairment e.g. having a large pencil case to store pens, calculator and visual aids; setting aside extra time to collect  any equipment required etc
  • additional verbal description and verification may be required to ensure the student has access to the learning environment e.g. describe a new classroom or excursion venue, provide verbal praise etc. The student with a vision impairment may miss a smile of encouragement!
  • the use of a laptop, iPad etc may be of great assistance to a student with a vision impairment as an alternative to handwriting and to reduce visual fatigue. Accessibility options, Software and apps are available for magnifying text and graphics, including icons, menus etc. Individual assessment of the needs of each student is essential. Keyboarding skills should be taught in primary school
  • strategies to reduce vision fatigue should be considered e.g. appropriate visual rests may include listening to audio tapes both for information and relaxation
  • students with a vision impairment often need to be taught social skills using a direct teaching approach. Modeling appropriate social behaviors can be difficult when you cannot see them accurately
  • students with a vision impairment may need additional orientation and mobility training
  • understanding and acceptance of the student’s vision impairment, individual learning modes and work production methods (e.g. braille, computer etc) may be facilitated through carefully planned simulation activities and class education programs
  • older students with albinism may benefit from genetic counseling. They may need advice on the likelihood of having children with albinism. This advice is available through the Royal Children’s Hospital which also conduct clinics at the Royal Women’s Hospital, Monash Medical Centre and in some country centres. Telephone (03) 9345 5157.

These notes were made by the staff of the Statewide Vision Resource Centre. They are general statements and may not apply to all students with this condition.

See also: Caroline Casey, Looking past limits

For more information visit: Vision and Vision Impairment.