Eye poking and eye touching in people with learning disabilities

Most of us rub or touch our eyes from time to time.  We might be sleepy in the morning or get a speck of dust in our eyes.  We might have itchy eyes from hay fever, allergies or infections that we find annoying.

Children and adults with learning disabilities - both sighted and visually impaired - rub, poke or touch their eyes for the same reasons as everyone else.  However there may be other reasons too - and they may do it much more often.

Touching or rubbing eyes may be a harmless mannerism which can serve different functions.  However, even ‘gentle’ eye touching often causes eye infections.

Some people’s eye poking is dangerous, resulting in damage to eyes and blindness.  This has caused them pain and distress and has dramatically changed their lives.  The lives of their family and supporters may also be affected.

Ways to help reduce the risk of damage to the eyes should be based on an understanding of why the person frequently touches or pokes their eyes.  Keeping people’s hands and nails clean is crucial.

This factsheet (one of a series) considers some of the issues involved in eye touching behaviours.  It aims to raise awareness of the possible risks involved and how to reduce them.

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.

First steps

It is important to minimise the risk of a person damaging their eyes.

• Hand hygiene for people with learning disabilities.  It is essential that their hands are kept scrupulously clean.  However, it may be difficult.  Fingernails need to be kept clean and short, with rounded ‘corners’ to reduce the risk of people scratching their eyes.
• Cleanliness for supporters.  Supporters also need to ensure that their own hands are clean - and they are not putting people at risk by touching a person after they have smoked, touched food, worked with another person and so on.

Thinking about eye poking

There has been considerable discussion over the years about eye poking in people with learning disabilities - both sighted people and people with visual impairments.

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 most people realise.  People of all levels of ability may harm themselves and still carry on successful lives.  Self-harm can take many forms - over-eating, excessive drinking or taking drugs, taking great personal risks - as well as deliberate acts such as head-banging or cutting.  Some self-injury may result in long-term physical problems or even death.

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

While eye poking is sometimes regarded as self-injurious behaviour, some adults with visual impairments firmly state that it should not automatically be regarded in this way.  Literature on blind and partially sighted children suggests that eye poking is ‘self-stimulatory’ and that most people ‘grow out of it’ - often because they discover its effect upon sighted people.

Some research suggests that visually impaired people press their eyes - and do not eye poke.  This research does not consider eye pressing to be self-injurious behaviour.  However, it may be difficult to differentiate between eye pressing and eye poking - and many people with learning disabilities have undiagnosed visual impairments.

Supporters of children and adults with learning disabilities who have ‘ordinary vision’ also suggest other reasons why eye poking and eye rubbing should not automatically be regarded as deliberate self-injury.

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

• A common habit in children and adults born with sight problems

Eye touching behaviours are part of a group of mannerisms or stereotypical behaviours colloquially known as 'blindisms' or 'blind mannerisms'.  They have been observed for centuries in people born with little or no sight (of all levels of ability) in societies throughout the world.

The retina at the back of the eye mostly responds to light energy.  The retina is also able to slightly respond to physical pressure.  This is known as ‘phosphene entopic phenomena’.  This pressure causes 'lights' to be seen by the person - even when they have their eyes shut.  It is believed that when a person presses on their eye they see flashes of light.  (Please do not copy this behaviour by pressing your eye to try and see 'lights' - it might harm your sight).

‘It’s almost a bodily function amongst people born with visual impairments - nothing to get excited about and definitely not always harmful if hands are kept clean.  Many people have fidgety habits and eye poking is the most common one amongst blind people’.

‘It’s just a harmless habit of mine.  I tend to do it when I’m concentrating - like listening on the phone.  I poke my eyes when my sighted colleagues doodle on note pads or have things to watch’.

‘It’s only a problem if he uses it to cut himself off from the rest of us.  We can keep his hands clean’.

• Self-stimulation and entertainment

Many people with learning disabilities, especially people with visual impairments, are in settings where there is little to occupy them.  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 control and enjoy.  It can be stimulating, providing visual rewards to people whose lives may be lacking in colour and interest.

‘I think I did it because I felt bored and isolated - but I was not aware that I felt like that at the time’.

‘I loved the coloured lights I could see when I pressed my eyes.  They were beautiful and I could make them appear whenever I wanted.  There often wasn’t much else for me to do.  As a blind kid I was always stopped from doing things in case I hurt myself.  My parents had such low expectations of me’.

‘He clearly enjoys eye poking.  He does not need help from anyone else to do it, nor is any special equipment required’.

‘It’s safe and she can control it.  Being blind and with severe physical disabilities, her world is tiny - only what she can reach out and touch - so she has discovered her body can provide her with entertainment that she can control and is rewarding’.

‘A lot of our residents do it.  People with visual impairments and learning disabilities need considerable help to successfully take part in activities.  We don’t always have the right level of support for them - and that’s when we see lots of eye poking going on’.

‘It’s his in-house entertainment.  He does it when he’s left alone - and he has a range of other mannerisms.  The challenge to us is how to include him and make activities meaningful for him’.

‘I used to poke my eyes as a child.  It made bright colours and lights appear in front of my eyes and I loved them’.

‘Eye poking made my sight totally vanish - and then return’.

• Sight-threatening 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) is associated with excessive eye rubbing.  It is more common in families with a history of allergies.

‘Keratoconus causes itchy eyes - for everyone.  She has now got drops which help’.

Some people start eye touching when their sight has deteriorated.  This may be their way of telling supporters that their sight has changed.  Even a small reduction of vision can cause distress, causing people to touch their eyes more often than before.

‘As his sight deteriorated, his eye poking increased’.

‘I think she thought she had a particle of dust or a foreign body in her eye and that she could remove it by rubbing.  But she had developed a cataract that needed surgery’.

‘It all stopped after the cataract operation - when his sight improved so much’.

People with learning disabilities who frequently touch their eyes may be refused eye surgery.  Successful operations may be undermined by the increased risk of their developing eye infections.

• Hay fever and allergies

People may have itchy eyes from hay fever or allergies - they need their allergies identified and treated.

‘For the summer months she has a runny nose and itchy eyes.  The whole family have hay fever and other allergies - so we should have expected it’.

‘People have no idea that hay fever is pure hell.  I’m 100% certain I would have scratched my eyes out if I hadn’t been given antihistamine pills and eye drops.  Wearing glasses also provides a reminder not to rub my eyes’.

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.

‘We use a non-biological washing powder.  Otherwise she gets itchy eyes, skin problems and a chesty cough’.

Some people may react to pollutants in the atmosphere - such as petrol fumes, air fresheners, cleaning fluids, perfume and so on.

• Eye infections

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.

The causes of infection need to be investigated and addressed.

Eye drops may be prescribed.  (Further information from our Look Up factsheet, ‘Eye drops for adults with learning disabilities’.)

• Eyelash, eyelid and skin problems

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

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

Scaly eyelids, bumps or cysts on the eyelid can all be annoying.  People often need help to clean their eyelids and apply eye ointment.  (Further information from our Look Up factsheet, Eyelid hygiene and applying eye ointment: a guide for supporters of people with learning disabilities.)

People may also have skin problems on their eyelids or close to their eyes, such as psoriasis, eczema, dermatitis.  They need treatment.

• Dry eyes

‘Dry eye feels like grit in my eyes.  I just want to rub them.  Eye drops help a bit.  But I have to keep using them’.

Older people are at particular risk of having dry eyes.  Dry eyes may be caused by

• air-conditioning
• looking at computer screens for long periods
• hormone replacement therapy (for women going through the menopause)
• eyelid problems (see earlier).

• Glasses

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

‘Getting her the right glasses helped her use her eyes to direct her hands - and reduced her eye poking’.

Many people with learning disabilities need support to adjust to wearing glasses.  (Further information in our factsheet, ‘Glasses for adults with learning disabilities’.)

• Tiredness

Most people rub their eyes when they are tired.

‘I rub my eyes when I am sleepy - but then so does everyone else.  The hospital were very worried that I might do some damage after the operation.  I didn’t.  I just slept’.

Tiredness may cause some visually impaired people to touch their eyes - even if they stopped eye poking long ago.

‘I still can find myself doing it - when I’m tired or stressed’.

If people are unusually tired there may be medical problems that need investigation.

‘He used to rub his eye a lot when he was tired - and he was always tired.  We discovered he had diabetes’.

• Improving sight

People may touch their eyes in order to hold them in a particular position.  They do this because it helps them to see better.

‘He seems to put his finger in his eye a certain way.  It looks as if he wants to move the scar on the front of his eye so he can see better’.

‘He seems to see better when he holds his eye in a particular way’.

‘He has nystagmus - wobbly eyes - so his eyes move around a lot.  I think he holds his best eye still in order to see things more clearly’.

• Hair

Hair that keeps falling into people’s eyes can be very annoying.  Fringes can irritate, causing people to touch their eyes.

• Stitches not removed after surgery

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

• Self-injury associated with a syndrome

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.  Their behaviour needs to be observed carefully, and any intervention should be based on the assessment made.

• Neurological problems

Eye poking and eye touching behaviours have occasionally been reported in people who have problems behind the eye.  Assessment by a neurologist is required to establish this.

• Communication

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 touches their eyes, this is a successful way of gaining attention.

It may be worth considering which situations create this behaviour:

‘It’s his ways of avoiding things.  He does it every time we ask him to do something he doesn’t want to do’.

‘If she can’t understand the conversation, she will poke her eye until we include her.  It’s her way of telling us that we aren’t treating her right’.

Some people with learning disabilities may have difficulty explaining their fears and anxieties to other people.  They may have a range of behaviours which show that they are distressed and as a way to release tension.

‘She does it when her mother has not visited recently - so we focus on her anxiety’.

‘When there’s far too much going on around him - pure sensory overload’.

‘It only happens when he is agitated or tired - and then it seems to be a way of relieving tension’.

‘It seems to be a response to pain’.

Supporters should not forget that people who do not have learning disabilities use self-injury as a way of expressing emotional turmoil.  People who eye poke may be deliberately harming themselves and may urgently need specialist support.

There may be many things that trigger eye poking and there may be many different consequences for the individual.

Observing and assessing people with learning disabilities who rub or poke their eyes

Many people with learning disabilities cannot explain why they frequently touch their eyes.

It is not always clear when ‘mild’ eye touching becomes a major health and safety issue - so it is important to observe people who regularly poke, touch or rub their eyes.

Record your observations - and discuss potential causes of eye poking with other people.  They may have reached different conclusions.

• Look to see if the person’s eyes are clear and shiny, have an infection or any damage.  If other eye conditions are present, be aware of any changes to the appearance of the eye.  Do this regularly!
• Check for eyelid and eyelash problems.  Does the person have cysts or styes?  Do they have skin problems near their eyes?
• Watch what the person is actually doing and which part of the eye they are touching and how.  Is their eye poking more like eye gouging, almost removing the eye from the socket?
• Ask if the person has done this in the past, or if it is a new behaviour.  Changes in behaviour may be the person’s only way of telling others that their sight has deteriorated.  Even a small reduction in vision can cause people considerable distress.
• Discover if a person suffers from allergies - and if they have been diagnosed by a doctor and treated.  Is there a family history of allergies?
• Discover if people are more likely to rub their eyes at a particular time of year.
• Establish if a person is more likely to touch their eyes at a particular time of day.  For example, people who are allergic to feather pillows or washing powder may rub their eyes when they have just got out of bed.  Do they touch their eyes more when they are tired?
• Watch if there are particular situations when people are more likely to poke or touch their eyes - such as when they are bored, upset and alone.
• Consider what are the consequences for the person.  Does the person use eye poking as a method of communication?  Are there any obvious rewards for eye poking?
• Is the person very upset?  What has triggered this distress?  What is their behaviour trying to tell supporters?  Does the person need additional help urgently?  Who is going to provide it?

Eye care and general health

People with learning disabilities need regular eye tests and health checks.

• Ask about recent eye tests.  What did the optometrist find?  Did the person have all the appropriate tests?
• Were glasses prescribed?  When should they be worn?  Does the person wear them regularly?  Are their glasses kept clean?
• Has a sight-threatening condition been found?  Has a referral been made to an ophthalmologist (eye doctor)?
• Is their eye poking a sign of physical health problems?
• Find out if eye drops or medication have been prescribed - and are being correctly administered.
• Is the person healthy?  Have they had a recent health check with their GP?
• Have their allergies been identified and treated?
• Has their behaviour changed recently?

The use of splints

We have sometimes been asked if it is appropriate for the person to wear arm-splints to prevent damaging their eyes.  Splints are a form of restraint, used in the past but seldom recommended now.  Restraining a person with splints is almost certainly a violation of an individual’s human rights.

People wearing splints frequently learn other ways to touch their eye or self-injure.  These new behaviours may place the person at even greater risk than the current behaviour.  It is usually much more effective to obtain support from psychologists or local challenging needs team/behaviour support service.

Discussing behaviour with people

Some people, especially visually impaired people, may be pleased when tactfully told how their eye poking is viewed by others - such as if their behaviour is viewed as ‘odd’.  They may want advice about changing their behaviour.

‘I enjoyed it - until I discovered its effect on sighted people’.

Other people may regard their mannerisms as their business, and resent interference.

‘I’ve done it all my life.  I did try to stop when I realised it might stop me getting a girlfriend.  But now I say it’s my right and sighted people have to lump it’.

Using information from observation and assessment

Observing people who regularly touch their eyes may provide supporters with ideas about how they might improve the person’s situation.

• Taking action on eye problems

The following chart gives advice and guidance but, if in doubt, do not hesitate to seek help or advice immediately.  It might save someone’s eyesight.

NEED / PROBLEM	CONTACT	WHEN
Damage to the eye	A&E Eye Department GP / Learning Disability Nurse	Immediately
Hay fever and allergies	GP	As soon as possible
Eyelash, eyelid and skin problems near eyes	GP	As soon as possible
Red eye / pus or sticky discharge from eye	GP/A&E Eye Department	Immediately
Frequent eye infections	GP/Optician	As soon as possible
Trauma to the eye	A&E Eye Department	Immediately
Change in eye colour	GP	Immediately
Whites of the eye turns yellow	GP	Immediately
Family history of eye conditions	GP / Optician	At routine appointments
Sudden loss of vision	A&E Eye Department	Immediately
Sudden change in vision	A&E Eye Department	Immediately
Newly acquired double vision	GP	Immediately
Grit or foreign body in eye	A&E Eye Department	Immediately
Dry eyes	GP/Optician	As soon as possible
Constant tiredness	GP	As soon as possible

If in doubt, please seek help immediately from either the person’s GP or Accident and Emergency (eye care department).

For general information and advice:

NHS Direct
0845 4647
www.nhsdirect.nhs.uk

Look Up information Service
0800 121 8900
www.lookupinfo.org

RNIB helpline
0845 766 9999
www.rnib.org.uk

Support for visually impaired people

Whilst many people with visual impairments do press or poke their eyes, it is important that supporters try to reduce this behaviour because of the risk of eye infections and additional damage to eyesight.

Some people with poor sight are so isolated that they get an interaction (whether positive or negative) with other people if they rub their eyes, so it may become a way of trying to gain some control over their environment and the people around them.

People are often in settings where their sight problems are not understood.  They may be struggling to make sense of their world.  They will be dependant on consistent support from all their supporters to understand and develop communication strategies that work for them.  Without this the world can appear confusing, with things happening without warning.

This means that supporters need to observe individuals and take action based on their observations.

This may include

• verbal prompts to alert people to their behaviour
• introducing activities that provide visual and sensory rewards
• ensuring people understand what is going on around them
• reassuring people at times of stress or when settings might be confusing
• considering different ways to help people take more control over their lives
• developing and extending people’s communication skills
• obtaining help from rehabilitation officers for visually impaired people (further information in the Look Up factsheet, ‘Obtaining specialist support for people with sight problems and learning disabilities’)
• adapting environments to promote independent movement (further information in the Look Up factsheet, ‘Adapting accommodation for people with learning disabilities and sight problems’).

Staff in many settings need training to work successfully with blind and partially sighted people with learning disabilities.

Improving sight

Some people hold their eyes in a particular position to make the best of their vision.

Help may be available from orthoptists, who may work at health centres or from local rehabilitation officers for visually impaired people.  (Further information in the Look Up factsheet, ‘Obtaining specialist support for people with sight problems and learning disabilities’.)

Alternatively people should be referred to low vision clinics, which will help them maximise their existing vision.  (Further information from our Look Up factsheet, ‘Low vision services for people with learning disabilities’.)

• Hair, shampoo or water in eyes

Hair needs to be kept out of people’s eyes.  Fringes that fall into people’s eyes can irritate, causing people to touch their eyes.

It may be helpful for people to have their hair washed with them sitting with their back to the basin to prevent water or shampoo getting in their eyes.

Some people may benefit from wearing goggles when swimming.  It is worth discussing this with an optometrist.

• Stitches left in after surgery

There should be discussion with the ophthalmologist (eye doctor) about removing any remaining stitches if they cause problems.

• Self-injury associated with a syndrome

Whilst some people’s self-injury may be related to their syndrome, it should never be assumed that this is the sole reason why they might poke or touch their eyes.  They need support to prevent them from damaging their eyes.

Communication support

Many people with learning disabilities - both sighted and visually impaired - use their behaviour to communicate, as they cannot express themselves successfully using speech or sign.

Supporters need to ensure that they can listen to the person’s ‘inner voice’ and act upon what the person is telling them.  This means that key information about the person and how they communicate is recorded in their person-centred plan and shared with key people in their lives, and regularly updated.

Many people with learning disabilities need general help to improve their communication skills so it may be helpful to make a referral to a speech and language therapist.  They can be contacted through the local community learning disability team.  (A referral from a GP is not normally required.)

(Further information on communication resources can be found at the end of this factsheet.)

Getting help

If there is any possibility of the person damaging their eyes or causing blindness, help should be obtained from a psychologist or challenging needs/behavioural support specialist.  This professional can help establish the reason or reasons for the behaviour and work with supporters to develop a strategy to reduce the behaviour.

It may be necessary to involve the local community learning disability team (CLDT) to carry out the strategy, and ensure that everyone is aware of the risk.

Reviewing behaviours

The reasons why people poke or touch their eyes may change over time.

Many people (especially people born with a visual impairment) may poke, rub or touch their eyes for the same reason for years.  However, it is not safe to assume that the causes of this behaviour never change.  People may have developed new or different problems.

Regular reviews should establish if there are any changes in the person’s eye touching behaviour, and if there are new or additional problems.

Conclusion

People with learning disabilities touch their eyes for a variety of reasons - and it is important for supporters to try to understand why.

People who frequently poke, rub or touch their eyes are at risk of damaging their eyes and eyesight.  They all need regular eye tests and health checks, but problems can also occur in the time between tests.

We all therefore need to closely watch people who touch their eyes to ensure that they are safe and that their quality of life is not undermined by preventable blindness.

Other Look Up factsheets on this issue

Looking for eye problems in people with learning disabilities

Eye tests for people with learning disabilities

Glasses for people with learning disabilities

Eye drops for people with learning disabilities

Sight in one eye only (monocular vision) and people with learning disabilities

Minimising problems in eye surgery for adults with learning disabilities

Low vision services for people with learning disabilities

Objects of reference

Encouraging and developing early communication skills in adults with multiple disabilities

 

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