Archive for the ‘autism’ Category

Can you help us by sharing your views?

The NHS in England has made a commitment to introduce new services for hearing care, eye care, and dental health for children and young people who attend residential special schools.

And the NHS has asked NDCS to develop information leaflets about hearing care for parents and carers that accompany this project.

Why is this new NHS project important?

  • Children with autism, a learning disability or both have a right to be able to access high quality care for their ears and hearing no matter where they go to school.
  • We know that children with autism, a learning disability or both are more likely to have difficulties with their hearing than their non-disabled peers.
  • Hearing is not only important in speech development and learning, hearing also connects us to our environment. For example, being able to hear and understand our environment, such as hearing footsteps coming or hearing music.
  • But we know that hearing difficulties are often unrecognised or undiagnosed because behaviours associated with hearing difficulty may be thought of as being part of the child’s personality, physical or learning difficulties, or complex needs.
  • And children often don’t have access to an audiology (hearing) clinic because there isn’t a suitable service that is nearby to attend, because hearing difficulties are not considered a priority for the child because of other more pressing health needs, or because those people working with or caring for the child believe that it is not possible for their child to have their hearing assessed.

By sharing your views you can help us develop accessible information for all parents and carers to help them understand why this work is happening, why it matters and how they can help their children to access these services.

We would like to hear more about your personal experiences of hearing tests and what you feel you would have found useful to have known beforehand. Or if your child has never had a hearing test, why this is the case and if you have any views are on what information you would need to help you access the hearing clinic. Please let us know by completing this 10 minute questionnaire

If you would prefer, I would be happy to organise a time to talk to you in person, by phone or by Skype. Please contact me at NDCS:

Vicki Kirwin
Senior Policy Adviser
Direct dial: 023 8065 2735
Email: vicki . kirwin @ ndcs . org . uk

All your feedback will be used confidentially unless you specifically give us permission otherwise. And once the project is finished we will ensure that you receive a copy and are told how your views and feedback was used.

Thank you!


What is Hyperacusis?

Hyperacusis is a term used to describe a general oversensitivity of the hearing so that everyday environmental sounds appear loud, intrusive and sometimes painful to the person affected. Often, children with hyperacusis have normal levels of hearing. A Deafness Research UK study suggests that 6% of children may suffer with oversensitivity to noise although certain groups of children seem to be particularly affected by hyperacusis, for example those with Autism Spectrum Disorder, Williams’ syndrome and Down’s syndrome. Many children with hyperacusis also have tinnitus.

Are there other types of sound intolerance?

Yes. Hyperacusis is used to describe a general oversensitivity of the hearing to all everyday sounds. If dislike or fear is specific to a particular sound, then the term phonophobia is used. Recruitment is used to describe a specific form of reduced sound tolerance in people who have a hearing loss.

What should I do if my child suffers from over-sensitivity to sound?

If your child wears hearing aids then they should be programmed taking into account any recruitment so that sounds are not amplified above the level comfortable for the child. If a baby or young child appears to startle or be upset by loud noises with their hearing aids in the audiologist should adjust the hearing aids to ensure that sound levels are comfortable to wear.

If your child doesn’t wear hearing aids and/or appears to have normal hearing levels then the first thing to do is ask your GP for a referral to an audiologist for a full assessment of their hearing. If the hearing tests are normal then your audiologist or GP can arrange for you to see a paediatrician who specialises in audiology or an audiovestibular physician (doctor who specialises in hearing and balance problems). The best course of action for each child depends exactly on their circumstances and needs. For some children a simple explanation of hyperacusis and knowing that they aren’t alone and lots of people experience it is enough to reassure them. For those childen who are very affected by their hyperacusis (and tinnitus if they have both) then they will be helped by specialist help from a paediatric audiology team with experience of childhood hyperacusis and tinnitus. Following assessment they will use a combination of techniques including an auditory desensitisation programmeTinnitus Retraining Therapy (TRT) and cognitive behavioural therapy.Combined with providing tools to help children self-manage these will give children back some control and reduce the impact of the hyperacusis on their day-to-day life.

Where can I get further information and support?

The British Tinnitus Association (BTA) has some great information on-line and available to download.  There is also a case study ‘When the world is too loud: understanding hyperacusis’ about techniques to help people manage their hyperacusis, and a book review of  Hyperacusis: Mechanisms, Diagnosis and Therapies by David M Baguley and Gerhard Anderson (published by Plural Publishing).

Information on auditory desensitisation and managing hyperacusis in children is available from Deafness Research UK.

The Tinnitus and Hyperacusis Centre (London) provides in-depth information about the biological and auditory processes of hyperacusis.

The Hyperacusis Network is a support network for sufferers of hyperacusis.

UCL run an annual Advanced Audiology Masterclass in Tinnitus and Hyperacusis. The 3 day Masterclass starts with a research update on the current understanding of the mechanisms of tinnitus and hyperacusis. It then addresses the different approaches for the assessment and management of these symptoms in adults, before focusing on paediatric patient management. In 2010 the lectures were recorded and can be watched free here including a presentation of a case study ‘Managing anxiety in a child with hyperacusis’.

Recently a mum left me a question on the NetBuddy forum about whether it was worthwhile following up a hearing loss that had been diagnosed 3 years earlier. Her 6 year old son had been diagnosed with autism at 3 1/2. At around the same time he had ABR testing that had shown a bilateral mild hearing loss. “However once the audiologist heard he had autism, he decided against hearing aids and since then no-one has really paid any attention to this.” Mum described his main problems in understanding and expressing himself with language, and he doesn’t always pronounce things correctly.

I am wary of making generalisations about groups of children and particulary so about children on the autistic spectrum who have such a diverse range of needs and abilities. It is true that some children with autism will not tolerate hearing aids. This can be physical and they are often the same kids that refuse to wear hats or headphones. There are also some who are very oversensitive to everyday sound (hyperacusis). But this isn’t the case for all ASD children so I do think there is nothing to lose in trying, especially when language development is a key issue for a child. Hearing aids can be programmed very conservatively to ensure they remain within the child’s comfort levels for sound. Hearing testing isn’t always easy as many do rely on play and cooperation with the child but there are a number of different tests that can be tried or adapted and we often have to do several types and build up a picture of the child’s overall hearing like a jigsaw. When a local audiologist doesn’t have alot of experience working with children with autism then it is worth asking the GP to refer to another hospital (perhaps a large specialist children’s hospital where they are likely to have more experience with children with complex needs).

ASD is thought to affect 1% of all children but as many as 5% of deaf children. Since newborn hearing screening was completely rolled-out across the UK in 2006 any deafness is usually diagnosed and intervention begun before autism becomes apparent. The cause of the deafness is as varied as the rest of the deaf population – including prematurity, CMV infection, genetics etc. It’s good to see that training is available such as The Ear Foundation’s Autistic Spectrum Disorder & Deaf Children course because audiologists and other professionals working with deaf children will be much more likely to have a child with ASD in their caseload than in the past when the autism was diagnosed first.

Some useful resources in the meantime:

Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders (National clinical guideline, SIGN & NHS QIS, 2007)

Recognising ADHD, Autism and deafness in the classroom (BATOD, 2010)

Assessing Diverse Students With Autism Spectrum Disorders (ASHA, 2011)

Social Communication Strategies for Adolescents With Autism (ASHA, 2011)

Managing Sound Sensitivity in Individuals With ASDs (ASHA, 2011)

Putting Research into Practice for Autism Spectrum Disorder (The Hearing Journal, 2015)

UCL run an annual Advanced Audiology Masterclass in Tinnitus and Hyperacusis. The 3 day Masterclass starts with a research update on the current understanding of the mechanisms of tinnitus and hyperacusis. It then addresses the different approaches for the assessment and management of these symptoms in adults, before focusing on paediatric patient management. In 2010 the lectures were recorded and can be watched free here including a presentation of a case study ‘The Autistic child with hyperacusis’

Oh, and my answer to mum’s was “this something we should keep pursuing?” – yes definitely! A mild hearing loss (21-40dB) is much like wearing earplugs all day. Children will often hear one-to-one conversation in quiet surroundings but struggle in noisy situations like classrooms. Because they can’t hear quieter speech they also miss overhearing a lot of information. Children need to be able to hear conversations going on all around them, even though they aren’t paying attention to it or when it may be about things that don’t seem important for young children to hear. This ‘overhearing’ is important for building vocabulary, gives children grammar, and general knowledge. There is lots of research now that shows that children with mild hearing loss are at risk of delays in speech and language development. Even if the hearing loss itself isn’t the main cause, when children have other learning or development problems then it is more likely to have an impact.

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