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Deafblindness

Background

Deafblindness, sometimes known as dual sensory impairment or multi-sensory impairment, is a combination of sight (see entry Vision disorders in Childhood) and hearing difficulties (see entry Deafness). A very small number of people with deafblindness are totally blind and deaf, but most have some useful vision and/or hearing. It may not be clear at first how well a child will be able to see or hear, especially if they have other problems. Deafblind people will have difficulties with communication, mobility and access to information.

An individual may be born deafblind (called congenital deafblindness) or acquire deafblindness later in life, and the needs and problems of these two groups are different. People born deafblind will often have other difficulties to cope with. They may have physical disabilities, learning difficulties (see entry Learning Disability), experience delays in learning or have challenging behaviour.

Credits

Medical text written October 2004 by Dr T Best, Chief Executive, Sense, London, UK. Last updated November 2011 by Stephen McCarthy, Deputy Head of Information and Advice, Sense, London, UK.

What are the causes?

A huge range of conditions can cause deafblindness. There is no single or main cause. Many of the conditions causing deafblindness are extremely rare.

The range of causes includes prematurity (see entry Prematurity and Sick Newborn); congenital genetic conditions, such as CHARGE syndrome or Joubert syndrome; accident; or illness, such as meningitis and in-utero infection, such as cytomegalovirus.

There are many causes of acquired deafblindness including the genetic condition Usher syndrome. Some people who have been born deaf or blind may also lose their sight or hearing through accident or illness.

A comprehensive list of causes of deafblindness is available from Sense (see the Is there support? Section).

How is it treated?

People with deafblindness need to get as much information as possible from their residual sight and hearing and from their other senses - using their senses together. For many, touch can provide a means of learning about the world and a means of communicating. Some deafblind people become very skilled in using the sense of smell, for example, and use it to identify people. Some come to recognise movement around them because of something as subtle as changes in air pressure on their skin.

Every person has different, individual needs, even people with the same diagnosis vary enormously in their abilities and character. Some conditions, both congenital and acquired may change over time, in how well children see or hear, or in their health or general development. There are however a wide range of interventions or therapies which may help.

  • For many deafblind people there is a role for individual human support services to provide support with communication, aid mobility and provide access to information. Roles such as communicator-guide or intervenor can provide invaluable support in living and learning.
  • Tactile communication approaches - communication through touch. An example of this is hand signing.
  • Cochlear implants/bone anchored hearing aids (for some).
  • Sensory integration therapy - involves controlling sensory stimulation in order for the child to adapt to the sensory information that they receive from their surrounding environment.

Inheritance patterns and prenatal diagnosis

Inheritance patterns
Some causes of deafblindness such as Usher syndrome are inherited. Some such as Joubert syndrome may be inherited or sporadic. Others such as Kearns-Sayre syndrome are predominantly a sporadic event.

Prenatal diagnosis
Where deafblindness is associated with a specific condition, prenatal diagnosis may be available.

Is there support?

Sense

Helpline: 0300 330 9256
Email: info@sense.org.uk
www.sense.org.uk

Sense is a Registered Charity in England, Wales and Northern Ireland No. 289868. It supports and campaigns for children and adults who are deafblind or have sensory impairments. The Charity works with children, young people, adults and older people with a progressive sight and hearing loss, offering a range of housing, educational and leisure opportunities.

People in Scotland are supported by Sense Scotland
Tel: 0300 330 9292
Email: info@sensescotland.org.uk
www.sensescotland.org.uk

Group details last updated March 2016. 

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