What is deafblindness?

Deafblindness means that your child has problems with both seeing and hearing. Congenital deafblindness is when the problems are there from when your child is born. Acquired deafblindness is when the problems appear at some point during childhood.

Deafblindness is a lifelong condition.

Deafblind children usually have one of the following experiences:

  • They have both hearing and vision loss from birth or early childhood.
  • They are blind from birth or early childhood and lose hearing later on.
  • They are deaf from birth or early childhood and lose sight later on.

A child doesn’t have to be completely deaf and/or blind to be considered deafblind. In fact, most children who are deafblind have a little bit of hearing or vision. They can use the sight or hearing they have, along with their other senses, to learn how to communicate with others.

Children who are deafblind will need help to communicate and make friends with other people. Otherwise, there’s a risk they might grow up feeling isolated.

Causes of deafblindness

Some of the causes of deafblindness in children include:

  • genetic conditions like Usher syndrome and CHARGE syndrome
  • viral infection during pregnancy
  • cerebral palsy
  • fetal alcohol syndrome
  • early premature birth
  • illness, trauma and injuries.
You can find more information about some of the causes of deafblindness in our articles on rubella, encephalitis and cerebral palsy.

Early signs and symptoms of deafblindness

Children who are deafblind might have eyes and ears that look the same as everybody else’s. Often, it will be something about your child’s behaviour or the way he uses his eyes that makes you think there could be a problem with his hearing or vision.

Most babies start to focus on faces and things by 4-5 weeks of age. They turn their heads to hear where a sound is coming from by four months. But if your baby is deafblind, you might notice she doesn’t seem to be doing this. She might not make much eye contact with you or other people, or reach out and move towards things.

Babies who are deafblind might:

  • sleep a lot, cry a little bit and not move their arms and legs much
  • not make sounds, grasp objects, sit, pull themselves up to standing and walk by the time you  expect
  • not react to loud noises, voices or sounds
  • take extra time to respond when you speak to them
  • rock backwards and forwards, bang their head or poke their eyes
  • not like being touched by people or things.

If you’re worried about how your baby or child is behaving or developing, you can talk about this with your doctor. You can also talk about any of your concerns with your child and family health nurse.

Diagnosis of deafblindness

The earlier deafblindness is diagnosed, the better.

All babies are offered hearing screening just after they’re born. These tests can pick up many hearing impairments.

If you’re worried about your child’s vision or hearing as he gets older, first see your GP. If it’s needed, your GP will send you to an audiologist and/or ophthalmologist. These specialists will look at your child’s ears and eyes, ask you questions about how your child acts, and do lots of tests. At the end of this, the specialists should be able to say exactly what the problem is.

Early intervention services for children with deafblindness

Your audiologist and ophthalmologist will guide you toward early intervention services.

These services connect you with health and education professionals who can assess your child’s abilities. These professionals can help you learn how to spend time with your child in ways that support her development. Children learn the most from the people who care for them and with whom they spend most of their time, so everyday play and communication can help your child a lot.

These professionals will also help you to understand your child’s communication style. This might include gestures and signs, personalised actions, drawings, body language and some speech.

And early intervention can help your child learn how to communicate, make friends and be around other people, and feel confident to explore his surroundings.

The team of professionals involved in supporting you and your child might include paediatricians, speech pathologists, special education teachers and orientation and mobility instructors.

It’s good for you and your child to get to know these professionals and work with them. This means the professionals will get a good sense of what your child needs to grow, learn and become more independent.

Effects of deafblindness

A child with hearing and vision loss has difficulty or delays in understanding what’s going on around her. This means that deafblindness can affect other areas of your child’s development:

  • Communicating – for example, your child might not see or hear someone waving and smiling at him or be able to make eye contact.
  • Talking – for example, your baby might not point to objects, so the people around her won’t name these objects.
  • Telling the difference between day and night – this might make it hard for your child to settle into a regular sleeping routine.
  • Sitting, crawling and walking – for example, your child might not want to move towards objects, because he can’t see or hear them.
  • Learning to read and write – your child might be delayed in learning the motor and listening skills she needs for reading and writing.
  • Playing – for example, your child might be afraid to touch certain textures or explore areas he can’t see.
  • Responding quickly to situations – because your child might not be able to learn through seeing, she might not know how to respond to a situation or experience and will take her time in responding instead of reacting.

To get over these challenges, your child will need step-by-step guidance to connect and make sense of words, sounds, touch and actions. Positive interactions and experiences with families and health professionals will encourage your child to have safe, independent and confident movement in his home, school and community.

You can get your child into exploring her environment using whatever sight and hearing she has – and all of her other senses. This will help spark her curiosity about the world around her.

Services and support for children with deafblindness

Many professionals and support services can help you and your family if your child has deafblindness.

Getting information
Learning as much as possible from your specialists will help. Don’t be afraid to ask lots of questions.

If you need more information about deafblindness, good places to start are:

The services system
Many services and supports can help your child achieve his potential. But finding your way through the disability services system can be tricky. Our Disability Services Overview can help.

Financial support for children with deafblindness
If you live in a National Disability Insurance Scheme (NDIS) trial area and your child has a confirmed diagnosis of deafblindness, your child can get support under the NDIS. The NDIS helps you get services and support in your community, and gives you funding for things like early intervention therapies or one-off items like hearing aids.

If you don’t live in one of the NDIS trial areas, your child can get funding under the Better Start for Children with Disability initiative. If your child is eligible for the NDIS, she’ll be moved over when it becomes available in your area. Read our NDIS and Better Start FAQs for more information.

Looking after yourself
Although it’s easy to get caught up in looking after your child, it’s important to look after your own wellbeing too. If you’re physically and mentally well, you’ll be better able to care for your child.

Talking to other parents can be a great way to get support. You can connect with other parents in a similar situation by joining an online forum or parent support group.