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Types of additional needs

About 30 to 40% of deaf children and young people also have one or more additional need. The term ‘additional need’ usually refers to a health or developmental condition which impacts on a child’s daily life. At the National Deaf Children’s Society, we use the term ‘additional need’ to mean any disability or long-term health condition other than deafness.

There are lots of reasons why a deaf child might have additional needs. In some cases, deafness is part of a genetic syndrome which also causes other additional needs, or one of multiple conditions caused by an illness or premature birth. However, some deaf children have additional needs that aren’t connected to their deafness at all – it’s just a coincidence.

If your child has any level of deafness as well as an additional need, it’s important to be aware of how their deafness might affect any treatments or adjustments made for their additional needs, and vice versa. As deafness is often an invisible disability, some professionals may forget that your child is deaf if they also have a more visible disability, such as a mobility impairment. You may need to remind professionals working with your child, such as their teachers or doctors, to be considerate of both their deafness and their additional needs. For example, some types of deafness will get worse with time, as progressive hearing loss is associated with certain syndromes. Children at risk of progressive hearing loss require ongoing hearing monitoring.

When planning adaptations for your child, such as when completing an Education, Health and Care (EHC) plan, your local authority (council) should consider all of their additional needs, how those needs interact, and how they might change over time. If a school or local authority distinguishes between ‘primary’ and ‘secondary’ needs, they should explain to you why they’ve chosen to do this and how your child’s secondary needs will be accommodated.

On this page, we’ll explore some of the things you and your family might need to think about depending on your child’s specific additional needs, and the organisations which may be able to provide more specialist support.

Our resource, ‘Deaf-friendly teaching: For staff in special schools’, contains lots of useful advice for professionals about how to support deaf children with additional needs. If your deaf child has additional needs but attends a mainstream school, their teachers may still find the resource useful.

ADHD and autism

Although deafness itself doesn’t cause emotional, behavioural or cognitive problems, deaf children of hearing parents are more likely to be diagnosed with autism spectrum disorder (ASD) and/or attention deficit hyperactivity disorder (ADHD), especially if they have delayed language development. Experts believe that this is probably because being unable to communicate with those around them can affect a child’s developmental pathway.

Some children with ASD can present as having a hearing loss when in fact they actually have normal hearing, but process sound differently. Additionally, some of the recognised causes of ADHD, such as prematurity, meningitis or anoxia (when your body and brain loses its oxygen supply), can also cause deafness.

To find out more, visit our webpages about supporting deaf children with autism or ADHD.

Auditory Neuropathy Spectrum Disorder (ANSD)

Some children have a diagnosis of deafness that is caused by problems with the nerves leading from the ear to the brain rather than the ear itself. This may be genetic or sometimes associated with being born prematurely and jaundice. ANSD is more commonly considered a cause of deafness than any other additional needs. 

A new start for Anna

When leaving Ukraine mum Olha and dad Viacheslav knew that they needed to resettle somewhere Anna, who is profoundly deaf and has auditory neuropathy spectrum disorder (ANSD), would get the support she needed with her communication.

Read Anna's story.

Auditory Processing Disorder (APD)

Some children appear not to hear well although they may have been assessed as having normal hearing. This can be because of a condition called Auditory Processing Disorder (APD), where the brain struggles to interpret and understand speech and sound.

A child may find it difficult to listen to and respond to sounds, with or without a hearing loss. APD often occurs alongside autism or ADHD.

Down's syndrome

Many children with Down’s syndrome have some degree of hearing loss. In most cases, the hearing loss will be a temporary loss caused by glue ear which will come and go as they get older. However, about 10 to 15% of all children with Down’s syndrome have sensorineural deafness, which is permanent.

To find out more, visit our webpage about supporting deaf children with Down’s syndrome.

Griffin's story

When life feels like a blur of medical appointments for Griffin (3), mum Clarissa makes sure his deafness is taken as seriously as his Down’s syndrome.

Read Griffin's story.

 

Learning disabilities

Although deafness is not a learning disability, some children with learning disabilities will also have some degree of hearing loss. However, it can be difficult to tell if a child with a learning disability has a hearing loss, because some of the behaviours which usually indicate a problem with the ears or hearing could also be signs of a learning disability. Some people assume that children with learning disabilities can’t undergo routine hearing tests because they won’t understand or co-operate with the test. This means that children with learning disabilities are often identified as deaf later than children without a learning disability.

There are specialist Audiologists working within some NHS Audiology clinics where the assessments are adapted according to the child’s needs, and the clinic is modified to provide a more calming environment. Audiologists may talk to families, carers and Teachers of the Deaf to understand the child’s needs and motivations in order to improve the clinical experience for the child.

If a child with a learning disability has an unidentified hearing loss, this can cause or exacerbate problems with speech and language, communication with others, learning and reading.

We’ve worked with SeeAbility and Contact to produce a parents’ guide to hearing care for children with a learning disability, autism or both. This guide has tips on how to prepare your child for hearing tests, and how to make sure they get the right support. 

Rafael and Nat's story

After years of pushing for one-to-one British Sign Language (BSL) support, Leigh and Hetty share how their local authority listened and put in place a successful trial of a one-of-a-kind deaf class for their sons who have additional needs.

Read Rafael and Nat's story

Loudness intolerance (hyperacusis and recruitment)

This is a condition where loud sounds can be uncomfortable and distorted. When a deaf child is fitted with hearing aids, audiologists need to check to ensure that sounds aren’t made too loud.

Loudness discomfort can be associated with sensory processing disorders such as autism.

Rare genetic disorders

In some cases, genetic testing helps a family to find a genetic cause of their child’s deafness, which may be part of a genetic condition. Although this news might be upsetting, it can be helpful to know about the condition so that you can find specialist support, meet other families of children with the same condition, and understand how the condition might affect your family in the future.

As genetic testing has become more widely available, an increasing number of children are being diagnosed with very rare conditions. In fact, each year, around 6,000 children are born in the UK with a syndrome so rare that it doesn’t even have a name.

If your child has been diagnosed with a rare condition, or you’ve been told your child’s syndrome is so rare that it doesn’t have a name, you might feel you’ve been left with more questions than answers. You might be worried about the future and confused about what this means for your child. Even if your child is the one of the only people with their condition, there are lots of other families in your situation and organisations who can help.

  • Genetic Alliance UK is a charity providing information, advice and support for families and individuals affected by genetic disorders.
  • SWAN UK is a network run by Genetic Alliance UK, which offers support for families affected by a syndrome without a name.
  • Gene People is a network providing support for families living with genetic conditions. They provide a free helpline led by genetic counsellors and may also be able to put you in touch with other families of children with the same condition.
  • Social media can be a great way to connect with other families whose children have the same genetic condition. Try searching the condition on Facebook to see if there’s already a group set up for families like yours!

Mental health conditions

Deafness isn’t a mental health condition, but deaf children are at higher risk of experiencing difficulties with their emotional health and wellbeing than hearing children. Research suggests that encouraging your child to develop emotional resilience and a positive deaf identity in the early years can reduce their chances of facing mental health problems in the future.

For more information about how you can support your child’s emotional development from an early age, visit our webpages about emotional health and wellbeing.

For information about mental health support for deaf young people, visit SignHealth.

Physical disabilities and mobility impairments

When deaf children have visible physical disabilities or mobility impairments, it can be easy for friends, family members and the professionals who work with them to forget about their deafness. When discussing your child’s support needs with professionals, you may need to remind them about how your child’s physical disability affects their deafness and work collaboratively to find solutions.

A deaf child with a physical disability may need to use different types of hearing technology or different communication methods than a non-disabled child with the same level of deafness. Deaf babies who have complex physical and medical needs may also miss out on early language and listening opportunities, which can delay communication and/or speech. Early intervention can be very beneficial.

Some parents shared their experiences of finding the right support for their deaf child.

“My daughter was refusing to wear her hearing aids at school but was fine with them at home. We realised it was because she uses a different wheelchair at school with a more supportive headrest. The headrest was rubbing against her hearing aids, causing feedback. We explained this to our occupational therapist, who adjusted the headrest.”

"Even though he’s not able to sign himself, my son’s first language is British Sign Language (BSL). His first school didn’t understand that and tried to communicate with him using speech and Makaton. He was frustrated, bored and his behaviour deteriorated. After a bit of a battle, our local authority allowed him to move to a deaf special school where he uses a combination of BSL and eye-gaze technology. He’s much happier now.”

Olive's choice

Olive is profoundly deaf and has cerebral palsy, making choosing the right hearing technology and communication approach an important decision for the family. Mum Jennie explains how they make Total Communication work for them.

Read Olive's story.

Vestibular conditions

The vestibular system is a tiny part of the inner ear and brain which helps us to balance. When the vestibular system is damaged, it can make us feel dizzy, have vertigo (the feeling that the room is spinning), or lose our balance easily. This is called vestibular hypofunction.

Because the vestibular system is part of the inner ear, it’s very common for deaf children to have problems with their balance. However, not all deaf children have difficulty keeping their balance, and not all children with vestibular conditions have hearing loss.

If your deaf child has a vestibular disorder, they may fall over more often than other children of the same age, take longer to get back up after a fall, and find it harder to take part in activities that require balance, like learning to ride a bike. They may also rely more on their eyesight to keep their balance and need a light kept on during the night to avoid falling over in the dark. Visit our webpage about deaf children and balance for strategies to help children manage vestibular disorders.

Visual impairment/Multi-sensory impairments

A child is considered deafblind if they have both a hearing loss and a sight impairment. This is also known as a multi-sensory impairment (MSI), especially in education. For example, teachers of deafblind children are called MSI teachers.

In 2022, it was estimated that 23,379 children in the UK had some degree of deafblindness. In some cases, deafblindness has an underlying genetic cause like Usher syndrome or CHARGE syndrome, but in most cases, there’s no clear reason why a deaf child also has a visual impairment – it’s just a coincidence.

Deafblind children may have an additional learning disability which can be associated with some syndromes, such as Alström syndrome.

It’s unusual for a child to be equally affected by their deafness and their visual impairment; they may feel more affected by their visual impairment than their deafness, or vice versa. This may change as they get older. How they prefer to communicate can also change as they get older or in different scenarios.

Sometimes a child may have a dominant sense and find it difficult to process more than one sense at the same time.

We have information about different communication choices for deaf children, including tactile signing for deafblind children.

Your child may not identify as deafblind, and that’s OK! However, it’s important for the professionals who work with your child to be aware of how both their hearing loss and visual impairment interact. For example, if your child wears hearing aids all the time but only wears glasses at school, it’s important to bring their glasses with you to audiology appointments, to make sure the hearing aids and glasses both fit comfortably. Wearing hearing aids on a softband can help to keep both hearing aids and glasses in place.

The charity Sense has lots of advice about communication choices and support for deafblind children and young people, including specific information about conditions that cause deafblindness. 

Gethin's experience of deafblindness

Gethin's family learned that he was blind early on, but it took longer to find out he's also profoundly deaf. Mum Jane explains how the family use hand-under-hand signing and sensory activities to make sure Gethin enjoys life to the full. 

Read Gethin's story.

Tinnitus

Although tinnitus is often associated with deafness, not all deaf children have tinnitus, and not all children with tinnitus have a hearing loss. For most children, tinnitus doesn’t cause any major issues – in fact, they may not even notice they have it! However, in a small number of cases, tinnitus can cause additional problems with sleeping, concentrating, anxiety and hearing aid use. Find out more about tinnitus.