By Alyson Mountjoy founder and Chair of APD Support UK
What is a hearing problem that affects people who may have perfect hearing, especially if they are autistic or have dyslexia? Auditory Processing Disorder (APD) is a neurological, lifelong condition that affects the way that the brain processes sound including speech. Someone with APD may have difficulty understanding speech as well as other symptoms and can be congenital or acquired at any stage of life.
APD is thought to affect anything up to 10% of children, and for those with learning disabilities, 40% may be affected. It can be hard to diagnose as it’s unique in everyone. In the UK, it can only be diagnosed by a consultant in audiovestibular medicine or an audiologist with specialism in APD.
Alyson Mountjoy, founder and chair of APD Support UK is on SNJ today to explain more about this invisible condition and the help that is available.
All about Auditory Processing Disorder, by Alyson Mountjoy
Auditory Processing Disorder (APD) is a debilitating condition, causing problems with the way that the brain processes what is heard. It is one of the “invisible disabilities” which affects all aspects of life and it needs lifelong support. Anyone could develop APD at any age: you can be born with APD, or it can develop due to head injury, after repeated ear infections, or by one of many other suspected causes. The cause makes no difference to how it is managed. APD is not rare yet it is still little-known and poorly supported. It is believed to affect as many as 10% of children worldwide (or 40% where those children also have learning disabilities) and over 20% of adults.
Other conditions
APD never exists alone, and any number and variety of other conditions can make coping with it harder and each condition needs full support. Everyone with Autism is now believed to have auditory processing problems of some kind. It is believed to be one of the main causes of dyslexia in up to 70% of cases (yet not everyone with APD will have dyslexia). APD can also exist in gifted children and adults, and both aspects need equal support. Someone with APD can meet the UK conditions for having a disability if it is severe enough.
APD and hearing
APD is not the same as hearing loss; it can occur in people with perfect hearing and those with hearing loss. Hearing itself is not affected by APD, but it is considered a hearing disorder according to the World Health Organisation. To explain, we need the brain to make sense of what we hear: without that what everyone hears is just noise. In someone with APD, the brain doesn’t do this properly. As well as not always understanding what is heard, APD can lead to a variety of other difficulties.
How APD affects people
APD can be hard to identify. The first sign is usually that the person appears to have difficulty hearing, even if they have perfect hearing. They may be struggling at school/work, often accused of not listening, or not trying hard enough. APD affects everyone in different ways and there are several different types of difficulty. You don’t need them all to get an APD diagnosis, just two of a certain severity; but even one APD difficulty can cause a lot of problems. The most common signs are problems with understanding and remembering what you hear, remembering what is heard in the right order, recognising the difference between speech sounds, working out the direction of speech, understanding speech when it’s noisy, etc. APD can also lead to issues using the phone, understanding strong accents, learning other languages, and more.
There is a list of APD symptoms in the “About APD” document on our website, (as well as other frequently asked questions/FAQs)
APD testing
Children with APD will become adults with APD and will need lifelong support, acceptance and understanding. Accurate diagnosis is essential, ideally done from age seven. APD is a medical condition and it can only be officially diagnosed by an experienced consultant trained to diagnose APD. The only way to know if someone has APD is by full testing. Even though reliable testing has been available in the UK since 2002, there is still just a handful of NHS testing centres in England that provide it. There is only one in Wales, and there are none in Scotland or Northern Ireland.
Information on referral and the testing process itself can be found in the “APD testing centres” document. It also has a list of recommended NHS testing centres and private ones that provide the recommended level of testing.
APD support at school and work
APD is not a “learning disability” and it does not affect intelligence. But it can have a huge impact on learning at any age. This is because of its effects on verbal communication which is vital to all aspects of life (also affecting written communication in a lot of cases). It is very difficult to say how to support learning in a child or adult with APD in general terms, because everyone needs support based on how APD affects them, taking into account their other conditions. But there is some essential information that schools need to know:
- Even if you have taught a child with APD before, each child with APD is different and will need individual support for how APD affects them, as well as for all the other conditions that they may have.
- Support and equipment given in an APD diagnosis report must always be provided, by schools/colleges etc. This is a legal requirement (and this applies to all their other difficulties too).
- They need to sit where they can see the teacher/lecturer clearly to lipread, and away from auditory/visual distractions (too much multisensory information at once can affect processing. This may not necessarily be at the front of the class.
- Never assume that a person with APD has understood what you said, even if they think they do (this issue can also affect them at home, or anywhere). They might not know they have misunderstood you, or that there is information missing. This means they may not ask for help because they don’t feel they need it. Instead, always provide pre-printed notes and vocabulary sheets (with meanings) for them to refer to. This is needed beforehand with pictures added if they are also dyslexic. The same process applies to instructions. Also, someone with APD should never be made to write their own notes (which may be incorrect or incomplete).
- Classwork and homework should be adjusted for each learner with APD due to delayed processing, or auditory memory problems. They might also run out of time (and not from lack of effort) because they haven’t understood the instructions or the information that the task is based on (see 3.). This can lead to unfinished work, which should never be sent home as extra homework.
- Allow breaks in a quiet place, when needed, to prevent sensory/listening overload when their brain may not take in, or remember any more verbal information.
More detailed suggestions for children can be found here; they can also be adapted for adult education. Having APD can affect career options and cause a variety of difficulties at work. This page provides suggestions, plus tips for employers.
The emotional impact
APD can cause daily stress and distress both to sufferers and their loved ones. Struggling to cope with APD, especially if not identified, accepted, diagnosed, or fully supported, can lead to anxiety, social anxiety, and even depression (even in very young children). There may also be low self-esteem and poor self-confidence. All of these can remain into adulthood. APD can also have a great impact on all types of relationships due to miscommunication. All of this is made worse by the effects of their other conditions.
Managing APD
APD cannot be cured and the consensus among specialists is that there are currently no effective therapies with any lasting benefit. Managing APD relies on the person developing coping strategies, as well as learning how to tell people what they struggle with and asking for the support that they need. Parents can help their child with this, as well as encouraging them to e.g., use subtitles on the TV, get enough rest, take breaks from noise etc. They will also need to make sure that their child’s school provides the support that all children with additional needs are legally entitled to. More information can be found here, with tips for parents and children.
About APD Support UK
APD Support UK is the only organisation in the UK (or elsewhere) that provides support for those affected by APD, while also raising awareness of this condition and fighting for UK-wide testing centres, acceptance and support. It has been shown that with an accurate diagnosis, coping strategies, and the right support in education and at work, people with APD can learn to manage its effects, get around it, and look forward to a brighter future.
Further information
The APD Support UK website provides a lot of additional free information on diagnosis and management, with information for medical and education professionals and employers, APD books, blogs, and more. The information contains UK laws and processes etc. but the content can be applied internationally. As well as support groups for UK parents and UK adults, we also have an international support group for adults. If you want more information on APD, or need support, please visit our website
Newsletter
APD Support UK also produces a free, quarterly newsletter, “The Listener.” This includes stories by parents and adults with APD about coping with APD, children’s stories and drawings, updates on promotion and research, tips, professional articles and guest pieces by other organisations. It can be found here.
First steps to help
The sooner that someone with suspected APD is tested, the quicker that they can get the help and support they need. If you think that you, your child or someone you know might have APD and need more information and support, please visit our website. If you want to help raise APD awareness, please share our website and newsletters, or let us share your APD journey, to show others that they aren’t alone. You can also follow us on social media @APDSupportUK
About Alyson
As a parent of a child with Auditory Processing Disorder/APD and other conditions, Alyson co-founded the first UK organisation to support families and individuals affected by APD and to campaign for wider recognition. When it disbanded, she founded and still chairs the voluntary organisation "APD Support UK" which is the only such organisation worldwide. Her website provides free information and links to her online APD support groups. Alyson has also worked with children with severe dyslexia and other additional needs as well as with children with emotional and behavioural difficulties. She is both an author of non-fiction books and a novelist and has written two books on APD (one for children and one for parents and professionals). They are based on over 20 years of experience in supporting individuals and families affected by APD, both in the UK and internationally. She has also contributed to various professional research projects, SEN charity blogs and publications. See our website for further information, support, and details of APD testing centres.
Also read:
- Savage cuts to support staff leave deaf children in England fighting for their futures
- The Deafblind world: The ‘Shoeness’ of a Shoe
- Nine out of 10 parents fear for their deaf child’s education amid the SEND crisis
- Updated exclusions and behaviour guidance and how a thoughtful school culture can avoid discriminating against learners with SEND
- Innovative use of student specialists has revolutionised our schools’ SEND therapy and cut assessment waits to just 10 days
- Nowhere to go: The lack of provision for young people with complex needs
- SENDInTheSpecialists: The campaign to boost investment in the SEND specialist workforce grows, and how you can get involved
- The dyslexia ‘battle’ and middle-class mums? I think we need to look at the broader picture
- Review: 101 Inclusive and SEN Maths and English Lessons
- When the words move by themselves – it could be Visual Stress
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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