Deafness and autism

When children have more than one additional need, it’s important to consider both and also how they interact with each other. Both deafness and autism can have a significant impact on communication and language, learning and mental wellbeing. On this webpage, we focus on some of the experiences that families may face if their child is both deaf and autistic.

Laura is mum to Andrew, who is deaf and autistic.
“Nobody can say how one is affecting the other. Can he hear but not show it because of the autism? Or can he actually not hear but can’t tell us because of the autism?”

What is autism?

Autism Spectrum Disorder (ASD) is a lifelong, developmental condition that affects the way a person communicates, interacts and processes information. It's important to remember that autism is a spectrum and how autism affects someone will vary greatly from person to person. As a spectrum disorder, autism can range from mild to quite significant learning difficulties.

However, most people with autism share certain characteristics.

• Difficulties with social communication and interaction, for example avoiding eye contact, not drawing parents’ attention to objects or events, difficulty understanding other people’s feelings or emotions.
• Repetitive behaviours, activities and routines, for example fixating on particular things, or being resistant to change.
• An over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain, for example startling easily or appearing to find noise painful.

Find out more about possible signs of autism.

Diagnosis

Many children in the UK are identified as having a permanent hearing loss at birth through newborn hearing screening. Hearing children are rarely diagnosed with autism before the age of two. If a deaf child is also autistic, this will often be diagnosed later because some of the indicators of deafness are similar to those of autism.

These include:

• a delay in acquiring language
• appearing withdrawn
• appearing indifferent to other people
• playing alone.

The delay in making a firm diagnosis of autism is because the professionals need to be sure that these behaviours are due to autism, not deafness. This is because autism often presents as a child having difficulties processing external sensory information, such as sound or light, as well as other sensory issues such as around food and eating.

Some parents find it helpful to track their child’s early development using resources such as our early years development tool, 'Success from the Start'. This helps them to share information about their child with the professionals who support them.

Things to look out for may include:

• poor eye contact
• not using common gestures such as pointing
• a delay in being able to pretend play
• poor body awareness and balance, for example bumping into things, rocking, spinning or moving the whole body to look at something.

If you have any concerns, you should raise them with your GP, health visitor or Teacher of the Deaf, and ask for a referral for a possible diagnosis of autism.

A diagnosis of autism is usually carried out by a team of clinicians, for example a child psychologist, a speech and language therapist and a paediatrician. Ideally, it will be carried out by professionals who have expertise in both deafness and autism as well as family and professionals who know the child best, although this isn't always possible. 

Research is currently underway to develop an assessment for autism in deaf children. You can find out more about this on Comic’s website.

Lorraine is mum to Kara (15), who is profoundly deaf and autistic.
“The diagnosis took a long time but it wasn’t a surprise at all. She was 12 or 13 when she was finally diagnosed. Kara was very good at hiding the signs of autism, she wouldn’t show her emotions at school but at home she’d let them out. Girls with autism often mimic everyone around them, they’re very observant to what’s going on and often just try to fit in. The school would say, "What are you talking about? Kara’s the perfect pupil!" But at home she could be angry, she was very emotional and would react to situations differently.”

Parenting a deaf child who is autistic

Finding what works for your child will often be trial and error, but building on your child’s interests and strengths will make a big difference.

We’re still learning about the impact of both deafness and autism on children and, since autism is a spectrum condition and deafness will also affect children in different ways, there is no one approach which is right for every child.

Below are some suggestions for what may help.

Promote communication

It’s important to be open and supportive to your child and allow them to communicate in whatever way they can. This may be a sign language, like British Sign Language (BSL), aural with spoken language, sign bilingualism, a sign system such as Makaton or Signalong to support speech, or Total Communication.

Whatever method of communication your child uses, it should be used consistently – both at home and in education. A speech and language therapist and other professionals working with you will be able to provide support and advice.

Children with autism may struggle with eye contact and joint attention (when parents naturally draw their child’s attention to something, for example, by looking at it themselves or using gestures). This can make the communication approaches often used by deaf children, such as lip-reading or sign language, more difficult.

Deaf children with autism who don't learn to sign from an early age may benefit from support such as visual schedules, calendars or cues for routine activities and objects of reference, to help them understand. These can be accompanied by programmes to help with interpreting facial expressions or learning how to use language in social situations.

Laura is mum to Andrew, who is deaf and autistic.
“Communication is a challenge. Andrew’s completely non-verbal, although I think he’d like to speak. He uses objects of reference, like a bib if he wants food, and will take our hand to lead us to something. We had no joy with sign language because of attention issues from the autism but we might try Picture Exchange Communication System (PECS) in the future.”

Behaviour

All behaviour is a form of communication. Children with autism can display challenging behaviour that may be hard to understand or manage as a parent. It's important to remember that 'difficult' or 'challenging' behaviour, known as a meltdown, is actually the child expressing an unmet need, rather than them being badly behaved, having a tantrum or being naughty.

The National Autistic Society has a guide for family members and friends of people with autism to find out how to anticipate meltdowns, identify their causes and minimise their frequency.

For deaf children with autism, this challenging behaviour can be due to frustration at not being able to express themselves because of delayed language development or because they’re feeling overwhelmed. It can be difficult to know what’s causing certain behaviours, but it’s important to work with your child to try to find the cause so you can then act to reduce or remove it.

By being reflective, tracking and observing carefully, it may be possible for parents and professionals to find out what is causing the behaviour, including if it’s the result of a particular sensory issue.

To do this, it can be helpful to think ‘ABC’.

A: Antecedent — what happened before the meltdown?

• What was the child doing?
• Where was the child?
• Who was with the child?
• What was the environment like?
• Was there a possible sensory trigger, such as light, sound, smell?

B: Behaviour

• What was the child’s reaction/how are they behaving?
• How long did the behaviour last?

C: Consequence

• What did you or other people present do?
• What impact have your/their actions had or not had?
• What happens next?

Using ABC, it should be possible to establish any links between the behaviour and specific triggers, such as information or emotion overload or sensory issues like light levels, textures, sounds and smells.

As children mature and develop more language, they can share what they find stressful or frustrating and begin to recognise how their body and feelings change in these situations. This allows them to anticipate and think about how they can control their feelings and their response in the future.

Older children may find our resource 'What are you feeling?' helps to identify their emotions and talk about their and others’ feelings.

Social stories and comic strip conversations are short descriptions of a situation, event or activity and include information about what to expect in that situation and why. They can help deaf children with autism develop greater social understanding and stay safe.

Susana is mum to Nicolas (7), who is profoundly deaf, autistic and has ADHD.
“If Nicolas is having a tantrum, communicating with him is tough; he’ll run around screaming, then disappear into a corner and we can’t get his attention. His behaviour then has an impact on the other children. When we found out about Nico’s additional needs, we’d often say, "Let him do it – it’s because of his autism." But he’s clever and sometimes takes advantage of that. We must find a balance between meeting his needs and not letting him pull the wool over our eyes! We’ve learnt to be firmer, give clearer direction, go to the children’s level to communicate. We’ve explained Nico’s needs to his siblings. Now they’re beginning to understand why we treat Nico slightly differently.”

Education

Some deaf children with autism will have a plan. These are legal documents which set out your child’s special or additional needs, their school placement and the support that has been agreed. More information about this can be found on our page about getting additional support in education.

As the number of deaf children with autism is small, it’s unlikely that there will be a school in your area with the specialist support your child needs already in place. This means that it’s vital the different professionals supporting your child work together to make sure your child’s needs are being met and frequently reviewed.

For example, if a special school for children with autism is agreed to be the best placement for your child, it’s very important that they still get support from a Teacher of the Deaf and specialist speech and language therapist, who can advise on hearing technology and communication needs.

It’s also important that the school your child goes to gives them the opportunity to use their preferred language and communication approach.

Some special schools for the deaf offer places to children with autism if they’re able to meet their needs, for example by supporting and developing the child’s social communication skills.

Kara (15), who is profoundly deaf and autistic explains what it’s like for her in a mainstream school.

“I’m in third year [Year 10] now so I get to pick my classes. It’s quite different as my tutors keep changing and I’m not with my favourite teacher anymore. It made me quite upset at the beginning. But I like all of my new teachers, they’ve been amazing with me. I really like my subjects too, drama is my favourite!”

Mental health

Autism, like deafness, is not a mental health issue, but deaf autistic children can have challenges with emotional health and wellbeing. This doesn’t mean that your child will definitely have problems with their mental health, but being aware of the risks and taking steps to develop emotional resilience and wellbeing is vital.

Deaf Children and Adolescent Mental Health Services (Deaf CAMHS) can help if you have any concerns about your child’s mental health.