Factsheets Eye Poking and Touching in People with Learning Disabilities

Introduction

Most of us rub or touch our eyes from time to time, we may be tired, have hay fever or an irritation.  Sighted and visually impaired adults with learning disabilities also poke or rub their eyes.  They may do it more frequently, and more intensely and for reasons that might be difficult for other people to respond to or to understand.

Some people’s eye poking is dangerous, resulting in damage that could lead to blindness.  It can be distressing for others to observe and may lead to others not developing relationships with the person.  Even ‘gentle’ eye touching often causes eye infections.

Ways to help reduce the risk of damage to the eyes should be based on an understanding of why the person frequently pokes their eyes. 

The factsheet includes information from:

• Informal surveys
• Advice from blind adults
• Members of the Keratoconus Group
• The special interest group on learning disability and vision.

Thinking about eye poking

Eye poking is often viewed as a form of self-injury - especially by supporters of people with learning disabilities.  Self-injury is more common than many people realise. 

When people who do not have learning disabilities are asked why they self-harm they usually explain that they use it as a coping strategy as a way of releasing tension when faced with great emotional pain.

Eye poking is often regarded as a self-injurious or dangerous behaviour.  However, people with visual impairments firmly state that eye poking or rubbing should not automatically be regarded in this way.

Possible reasons for people with learning disabilities poking or touching their eyes

Eye touching behaviours are part of a group of mannerisms or behaviours sometimes called 'blindisms'.  It may serve to relax, stimulate or reassure the person, just as thumb-sucking, rocking or cigarette smoking may for others.  

The light sensitive retina at the back of the eye is able to respond to pressure caused by the person poking the external eye.  This pressure causes 'lights' to be seen within the brain – even if the person is blind or have their eyes shut.  This is known as ‘phosphene entopic phenomena’.

• Self-stimulation and entertainment

  Many people with learning disabilities  and visual impairments are in settings where there is little to occupy them, or no-one to interact with.  They may spend a considerable amount of time each day waiting for others to help them.

  Eye poking may be one of the few activities that they can  enjoy.  It can be stimulating and provide visual rewards (within the brain) for people whose lives may otherwise be lacking in colour and interest.  It is an activity the person can control.

• Sight-threatening eye conditions and sight loss

  People may have developed a sight-threatening condition, which needs treatment.  There is some evidence that keratoconus (a sight-threatening condition effecting the cornea) is associated with excessive eye rubbing.  It is more common in families with a history of allergies.

  Even a small reduction of vision can cause distress, causing people to touch their eyes more often than before.

• Hay fever and allergies

  People may have itchy eyes from unidentified hay fever or allergies.  For some people the ‘hay fever season’ lasts from April to October, making their eyes really itchy for months on end.  People may have other allergies too.

• Eye infections, eyelash, eyelid and skin problems

  Some people have frequent eye infections. These infections can make the eyes feel itchy or sore, increasing the likelihood of people touching or poking their eyes.

  People may have in-growing eyelashes, which can severely damage eyesight.  These may need to be removed by an optometrist or nurse.

  People with certain conditions (such as Down's syndrome) are also prone to blepharitis and other problems that cause inflammation of the eyelids. 

  Scaly eyelids, bumps or cysts on the eyelid can all be irritating or painful.  People often need help to clean their eyelids and apply eye ointment.  People may also have skin problems on their eyelids or close to their eyes, such as psoriasis, eczema, dermatitis. 

• Dry eyes

  caused by:

  • air-conditioning
  • looking at computer screens for long periods
  • hormone replacement therapy
  • eyelid problems

• Glasses

  Wearing the wrong glasses can make people touch their eyes.  They need the correct prescription.

• Tiredness

  Most people rub their eyes when they are tired.

• Stitches not being removed after eye surgery

  Stitches deliberately left in place by the consultant may be annoying and uncomfortable.

• Self-injury associated with syndromes or neurological problems

  Some people have a genetic condition or biological anomaly which is linked to self-injury or a lack of awareness of pain - although this link is not fully understood.

  However, it should never be assumed that eye poking or eye touching has been caused by their syndrome.  Behaviour must always be observed and any intervention be based on the assessment made.

  Eye poking behaviours have occasionally been reported in people who have cortical problems or acquired brain injury.  Assessment by a neurologist is required.

• Communication or attracting social attention

  Eye poking may be a way of gaining attention that the person desperately needs.  It may be a means of communicating - for example, if someone rushes over every time a person pokes their eyes, this is a successful way of the attention the person needs.

In the next  Eye Poking and Touching - Strategies for Supporting People we consider ways of supporting people who may poke their eyes.

June 2009

Related Information:

Eye Drops for People with Learning Disabilities

Low Vision Services for People with Learning Disabilities