Alyson Mountjoy is the founder of APD Support UK, which provides information and useful links for people affected by Auditory Processing Disorder, a condition that affects her son.

She has also written two books on APD – one of which we reviewed a couple of years ago – and has contributed to various professional research projects, SEN charity blogs, and other related publications.

At our 2023 conference in Birmingham last September, she presented a comprehensive overview of the condition, including the many ways it can impact the lives of patients, how it can be identified and diagnosed, and how to support those who have APD.

You can watch her presentation in the following video, which includes a group discussion towards the end, and we’ve also included the transcript below.

You may also be interested in watching the discussion by Bernie and Abbie Reddington about living with APD, which took place at the same conference.

Transcript

Alyson’s Presentation

Hello, my name is Alyson Mountjoy.

My journey supporting people living with APD started in 1999 when I realised that my child, now an adult, had difficulty with understanding and remembering speech.

A hearing test revealed perfect, even hyper-acute, hearing. No one could tell me what was wrong, and there was no information, testing or support in the UK at that time. So I began looking for answers.

I have continued to research and share information and support ever since, so that no one else would be as lost as I was when my journey began.

I have since written two books on APD based on my own experiences and observations and those of the thousands of individuals and families touched by APD that shared my journey. I have also contributed to UK and international professional research projects and I will continue to fight for wider APD testing, recognition and support.

This presentation will give you a brief overview of what I have learned about APD and its complexities, how it affects people, how to get a diagnosis, how to live with it and ways that others can help to support those who live with it every day. The things I would have wanted and needed to know from the start.

APD stands for Auditory Processing Disorder. This is a very complex condition with a lot of misinformation and myths surrounding it.

APD is a medical condition of neurological origin. APD affects how the brain processes sound, including speech. APD can be present from birth or develop at any age from a variety of causes.

Anyone could develop APD. You might already have it and not know.

APD is caused by damage to the brain. APD can be genetic, it runs in some families.

Mutation of the PAX6 chromosome is believed to be one such cause. This is what also causes aniridia and an estimated 50% of people with aniridia are thought to also develop APD.

There are many other possible causes too, including frequent ear infections leading to glue ear, or epilepsy, head injury or other medical conditions and more.

However, the cause doesn’t matter. It doesn’t affect how it’s diagnosed or managed. What is important is learning how the person is affected by APD and how they can best be supported.

APD is not rare, despite what you might have heard. APD being rare is one of the many myths that surround this condition, making it harder to access accurate testing, get a valid diagnosis or access support.

It is often said to parents or adults who suspect APD when seeking referral, accompanied by comments like “You, or your child, couldn’t possibly have it”, and then they are sent away.

APD is thought to affect up to 10% of children or up to 40% if they also have learning disabilities. APD is thought to affect 20% of adults. But because there are still so many people undiagnosed, the actual numbers could be a lot higher.

There still seems to be a lot of controversy around APD and its relationship with hearing, but the facts are clear. APD does not cause hearing loss.

Mostly, APD exists in people with normal hearing, but it can also occur in those who also have hearing loss. This can make APD harder to cope with, because the brain needs clarity of speech at an equal volume in both ears to help to process it.

APD is a global condition recognised by the World Health Organization. It’s included in the 2023 version of the ICD-10, the International Classification of Diseases, which also contains other conditions, and in their 2021 report on hearing as a “hearing disorder”.

This is because the brain controls how speech is understood. Without the role of the brain to make sense of speech, everything that we all hear every day would just be noise.

In someone with APD who has no hearing loss, sound and speech reach the brain perfectly well. But without the brain doing its job efficiently in making sense of it all, it would just be unintelligible noise to all of us.

Those with APD often say that it sounds like people are speaking in a foreign language. In the most severe cases of APD, language has no meaning.

The hearing function is not complete until sounds are converted by the brain into an accurate interpretation of sound, such as music or intelligible speech that we recognise and understand.

Therefore, the brain is an essential part of hearing, and in APD that very important part of the hearing process is damaged and the information received is corrupted. So processing, understanding and remembering what is heard cannot be completed efficiently.

APD can also be considered as a sensory impairment, because it affects what is heard. A communication disorder affecting both receptive and expressive communication, what is heard and what is said. And for some, it can affect what they read and write too.

A neurodivergent condition, because the brain of someone with APD works in a different way to the average or neurotypical person. An invisible disability, because its effects are not obvious as with a physical impairment.

There are several difficulties that can be tested for. Anyone might struggle with some of these issues at times, but a child or adult with APD will do so regularly.

The difficulties can include understanding and remembering verbal information or speech, understanding and remembering verbal information in the presence of background noise, remembering verbal information in the right order, difficulty selectively processing speech coming from a particular direction, Spatial Processing Disorder. And I’ll explain more about that later.

They can also test for difficulty with identifying, remembering and manipulating sounds and the differences between them. Perceiving gaps between words – just imagine if everything you heard with just one long string of sounds with no breaks between them.

Also problems with higher listening tasks, for example drawing inferences from conversations, understanding riddles or comprehending verbal mathematical problems.

Any child or adult with APD could have any combination of these difficulties. That’s what makes it complex to identify and hard to manage.

These are just the difficulties that are identified by testing. Later on, I will outline more APD related difficulties that also significantly affect daily living.

APD normally does not exist alone. There can be any number and variety of other conditions and difficulties, mostly unrelated. These will impact each other, making the effect of each harder to cope with.

It is now believed that everyone with autism has APD in some measure, but not everyone with APD has autism.

The APD difficulty called auditory discrimination, which affects identifying, remembering and manipulating sounds and the differences between them, known as phonics, can lead to problems for some people with reading and spelling, known as dyslexia. This type of dyslexia is known as auditory dyslexia.

The other known cause is Visual Processing Disorder or VPD, leading to visual dyslexia. You can have either or both causes of dyslexia, but you can also have APD, VPD or both and not have any problems with reading or spelling.

To help someone with dyslexia, you need to know the cause. Remediating auditory dyslexia with phonics will not work, because their brain simply does not identify, remember or use the sounds efficiently. It is a neurological deficit.

Those with visual dyslexia alone can benefit from using phonics and those who have both need a more multi-sensory approach.

The APD difficulty can also affect learning to speak, because if you can’t differentiate between the different sounds or remember them correctly, you won’t be able to reproduce them properly as speech. But APD does not affect intelligence.

If someone just has an APD diagnosis, it normally means that the other co-existing conditions, disabilities or difficulties haven’t been identified or diagnosed yet.

If there are difficulties that don’t fit with APD, you need to keep looking until you have identified each cause. Some parents are accused of collecting diagnoses, but a diagnosis is normally the only way to get their child support. And even then, it’s a struggle.

The first sign of APD might be that the person seems unable to hear. So the first step is always to get a hearing test to rule out hearing loss. If the hearing test shows normal hearing, APD should then be investigated.

This is the point where patients are sent away and told nothing is wrong. But the difficulties are still there and they need to know why.

Even if there is hearing loss, APD might also be present. There will be indicators that don’t fit in with hearing loss. For example, if they struggle to remember what they hear or if any of the other difficulties mentioned earlier are present.

If APD is suspected, only specialist testing can rule it out. It’s vital to remember that everyone with APD is affected uniquely by APD due to the varying severity and combinations of difficulties.

Then there are the other coexisting conditions to consider. Conditions with maybe similar symptoms which can mask it or even lead it to be misdiagnosed.

APD is different to other medical conditions that are clear cut and have the same set of easily recognised symptoms in everyone. But unlike conditions like autism or attention deficit disorder, which rely on just a checklist of symptoms and observation, there are reliable tests used to diagnose APD or rule it out definitively.

In the UK, only a consultant in audiovestibular medicine or an audiologist with specialism in APD is qualified to diagnose it or rule it out. It is not true that any audiologist, speech and language therapist, occupational therapist, paediatrician, educational psychologist or other professional can diagnose APD.

Even today, there are still only three NHS APD testing centres in England and one in Wales that provide the appropriate tests and professionals qualified and experienced enough to give a valid diagnosis in children. For adults, there is just one in England and one in Wales. There are none at all in Northern Ireland or Scotland.

APD Support UK provides a list on the website with full details of who can refer and who can test and the criteria. Also reliable private APD testing centres. Anywhere else will normally be basic screening, which can miss even severe cases of APD and cannot give a valid diagnosis. If you think we’ve missed any, please ask them to email me to be added to the list.

There are many barriers to APD diagnosis. The biggest barrier is that medical and educational professionals don’t know how or where to refer. Here are just some of the others.

GPs and local hospitals are reluctant to refer out of area due to expense, or they’re told to refer locally because a proper diagnosis is available. But most hospitals claiming to diagnose don’t buy or use the full testing battery and are also untrained in this specialist area. So they just use basic screening tests as a way to give a diagnosis.

Screening alone cannot give a valid diagnosis. It should only be used to indicate which of the tests mentioned before are needed.

Even severe APD can be missed, especially when those screening lack the training and experience to even interpret the results properly and when no further tests are carried out. Those hospitals will then refuse to refer on to one of the full testing centres and people who might have APD are just told they don’t have it and are simply sent away.

All of this is deeply worrying when the appropriate tests have been available for almost 20 years and APD has an NHS web page with a link to the APD Support UK website. Instead of unreliable screening, we need everyone suspected of APD to be referred to one of the specialist testing centres.

Other barriers include the belief that APD does not exist or that it’s rare, that there’s no APD testing available or it isn’t good enough, and not knowing what the symptoms are, or thinking that you need to have them all.

Some medical professionals believe that APD is an education problem, when it’s a medical condition. So they just send parents away to speak to their school SENCO.

It’s also a belief that there’s no point in getting a diagnosis because there’s nothing that can be done. It’s true that APD can’t be cured but access to support is essential and a legal obligation.

The more APD is publicised and the more aware the general public and professionals become of its existence and where to go, the less time each child and adult will have to struggle to gain validation and essential support. Even a late diagnosis as an adult is well worth it.

As well as a list of the recommended testing centres, the APD Support UK website provides APD guides for most medical and education professionals with appropriate referral pathways and facts to dispel the myths to hopefully remove the barriers.

Consultation, testing and diagnosis are usually carried out on the same day where possible, but this can vary between centres. The hearing based tests are carried out in a soundproof room wearing headphones and last about an hour and a half.

You just need two APD difficulties of a qualifying severity for a full diagnosis of Auditory Processing Disorder. Any difficulties of lesser severity merit a diagnosis of auditory processing difficulties. Even one can be debilitating and will need support.

Spatial Processing Disorder affects locating the direction of speech or sound and/or recognising who is speaking in a group, for example a teacher. It’s the only difficulty that can have a standalone diagnosis. It can also be one of the two required difficulties for a full diagnosis of APD.

It can lead to safety concerns, for example in traffic, if a child cannot process the direction of vehicles when crossing the road just by listening, or tell how close they might be.

A diagnosis report should follow in the post a few weeks after testing. Parents should inform their child’s school of the test results as soon as they can.

The same applies to adults seeking support in the workplace. Give them a copy of that report as soon as you receive it. Always keep the original of any report.

The report should contain recommendations for reasonable adjustments, which they must implement by law. This might include equipment such as an assistive listening service or ALD.

Even a diagnosis of auditory processing difficulties merits support. If you don’t understand the report, it’s best to contact the person who wrote it and ask them to explain.

The stages of learning to live with APD are these.

Acceptance of what is and letting go of what might have been – In my book for parents and professionals, I describe this process as similar to the stages of grief, and acceptance is just as important at any age.

Information – Learning as much as they can about how APD affects their child or themselves as an individual, and getting used to any other diagnoses in the same way.

Strategies – Finding out the APD difficulties affecting that person, finding ways around the problems and learning to apply them to a variety of situations.

Support – Knowing their APD and what makes it harder leads to working out what can help.

Self advocacy – Learning to ask for the help that they need. This process can also help people manage any type of condition.

According to the Department for Work and Pensions in the UK, you are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a substantial and long term negative effect on your ability to do normal daily activities.

According to that definition, and depending on the type and severity of APD difficulties present, APD qualifies for the definition of a disability in the UK, because of its effects on communication.

APD is not itself a learning disability. However, it is a medical condition that can greatly impact learning due to its effects on communication.

So it’s a legal obligation for learning institutions to provide support for learners of all ages for APD and all other additional needs, by way of reasonable adjustments and equipment where specified in a diagnosis report.

It’s also a legal obligation for local authority sensory teams and teachers of the deaf. This is because of the role of the brain in hearing and because it’s a sensory impairment and a recognised hearing disorder.

Currently they will often refuse support and equipment unless the learner also has hearing loss. But refusal to support APD can be seen as disability discrimination, which is unlawful.

It’s also a legal obligation for employees to provide support at work by way of reasonable adjustments and equipment, as specified in a diagnosis report for APD and all other additional needs. Refusal to support APD in the workplace can also be deemed disability discrimination, which is unlawful.

Even though there is no legal requirement to do so, it’s advisable to tell your employer that you have APD, or any other disability or condition, if you think you will need support at work. Do this as early on as you can and definitely before your work starts to suffer. They can’t help if they don’t know about it.

You may not need support at first. You may not even have a diagnosis when you start the job. But if your job has changed, if you get a promotion, your hours change or the work gets harder, if your work environment changes or if you get a diagnosis later on, you can just ask for help at any time.

Just work out which parts of your job cause you problems and think of things that would help you to do your job to the best of your ability, then speak to your employer. The APD Support UK website has articles that can give you suggestions.

People with APD and other conditions can also apply for disability benefits such as Personal Independence Payment (PIP) or Disability Living Allowance (DLA). They can also apply for Disabled Students Allowance (DSA), at college and university and access to work to help fund reasonable adjustment and equipment in the workplace. If your APD affects how much you can work, you could also apply for Employment and Support Allowance (ESA).

Success is not guaranteed. That will depend on the person’s unique APD profile and severity, the impact of their co-existing conditions, and how much support is needed with daily activities. But communication is a huge part of daily living.

Any and all other conditions, including stress, anxiety and other health and mental health conditions, should also be included in the application.

The next set of slides will discuss some little known common side effects of living with APD and dispel some more misconceptions about the condition.

Processing speech is not just a problem when it’s noisy. That’s another myth. Someone with APD can struggle to process a one-to-one conversation in a soundproof room.

Background noise just makes it harder, as does hyperacusis, a condition causing sound sensitivity or hyperacute hearing, which often accompanies APD Assistive listening devices, or ALDs, are not all a person with APD will need by way of support, because a problem with understanding speech when it’s noisy is not all that might affect them. That is another myth.

But for those that have that problem or have difficulties with the direction of speech, an assistive listening device can be essential. But they should not be overly used or relied upon, and should never replace the development of coping strategies, because there are situations for which they may not help.

Support should also include good room acoustics to reduce ambient noise, which would benefit everyone.

Despite popular belief, APD is not about poor listening skills or not paying attention. Even when they are listening and can hear clearly what is said, the brain of a person with APD might still not allow them to understand part or all of what they hear, or remember it, or use that information correctly.

People with APD can be distracted at times, but this is not an attention deficit problem as such. It’s because their vision and other senses are heightened to compensate. This additional sensory awareness, on top of listening fatigue, can also lead to sensory overload.

With APD there can be good days and bad days. The effects of APD are intermittent and variable from day to day, and even throughout the day. This is one of the things people find it very hard to understand.

This can be affected by tiredness, illness or stress, or other factors such as hormonal fluctuations during puberty, pregnancy or menopause.

Exhaustion is a major problem for those with APD, from simply doing what others take for granted, trying to process what they hear. It can be worse on bad APD days.

Asking someone with APD if they’ve understood what you said is pointless. Being able to repeat what you said parrot fashion just means the person with APD has heard it, not that they have processed it or understood it.

They may not know that they’ve not understood it or argue that what they thought they heard was correct. It can cause them a lot of problems and great distress, knowing that they can’t trust their own brain.

Because of this, someone with APD will need visual reinforcement of all verbal information and instructions, so that they can check back and ensure that they do understand. Also so that they don’t have to rely on their auditory memory.

Post-processing is a term I’ve adopted over the years to describe the delay that someone with APD can experience in processing, understanding and remembering what is heard. For some people with APD, this takes a long time, maybe several hours or even overnight, before they remember what they heard that day.

When a child or adult with APD comes home from school or work and you ask them about their day, they may not remember until bedtime, and need to talk about it then to get it out of their head so they can sleep, and this should be encouraged. It can lead to sleep issues for a lot of people, which adds to their exhaustion, and also makes processing and coping harder.

Even when they remember it, there can be bits missing or parts that make no sense, sometimes because just one vital word was misprocessed.

Expecting someone to rely on having processed verbal information at school or at work, and to discuss it and work on it, is unrealistic and written back-up is needed.

Post-processing is not part of the APD testing battery, but it’s something that causes many people with APD a lot of problems.

Everyone with APD can struggle with at least some of the more common yet little known side effects of living with APD.

They can include using phones and processing or understanding digital voices, for example when using a computer, doing remote meetings or learning, playing and chatting on games consoles, etc and even watching cartoons or anime can be a big problem. This is due to degraded sound signals and the inability to lip read or rely on visual clues like facial expressions in these situations. They will need subtitles.

Unfamiliar voices and speech patterns, also strong accents, can also be harder to understand. Some people with APD find high-pitched voices harder to understand, others have more difficulty with low-pitched voices.

Processing and regulating the volume and tone of their own voice means that some people with APD speak very loudly and others very quietly, and this can lead to others making incorrect assumptions about their personality as a result. Quiet indicates quiet or shy, loud indicates that they’re aggressive or brash.

People with APD can also perceive that someone else dislikes them or is shouting at them or telling them off, when this is not the case.

Not processing certain sounds can lead to failing to process fire alarms, or phone or clock alarms, leading to safety or punctuality issues.

Also, blocking background noise to fall asleep or work can become an automatic coping strategy in some people.

As well as causing poor short-term auditory memory, which can be tested for, APD can also affect other types of memory too.

Auditory working memory affects holding verbal information in your head long enough to do something with it, such as remembering a question to work out to reply or a list of numbers long enough to do a sum. And if the information is not processed properly, that action will fail. Also, misprocessed information will be stored in the long-term memory as incorrect or with bits missing.

Word retrieval issues, or not being able to think of the right words when you need them, can affect both verbal and written tasks, and lead to delays and unfinished work.

Verbal tests like mental maths and spelling tests, also time tests and activities, can put people with APD at a disadvantage and should be avoided or extra time given.

Support for learners with APD should depend on their individual APD profile and other conditions. APD Support UK provides a list of recommended strategies.

The most important is that because of their difficulties with verbal information and auditory memory, they should be given visual reinforcement of all verbal information, all verbal instructions including important notices and deadlines, and all subject-specific vocabulary with meanings. This can be provided as typed notes, diagrams and/or texts and emails.

Hearing unfamiliar words can cause a delay while they work it out, and they can replace a new word with a known one, totally changing its meaning.

Someone who also has a visual impairment like aniridia, or visual processing difficulties, or cerebral visual impairment, can benefit from multi-sensory input, speech and visuals, in large print or in colour, or a colour that suits them if they also have Irlen syndrome. Using their preferred learning style can also help.

Learners with APD should not take dictation or be left to make their own notes, because they don’t accurately process verbal information. There might be incorrect sections, there might be sections missing, or sections might be written down in the wrong order. Their notes have to be correct, because they have to work from their notes, and they have to revise from their notes for tests and exams.

Access to education and success in learning should not rely on a child’s ability to take dictation or make their own notes. It puts children with APD, and those with hearing loss and certain other additional needs, at a distinct disadvantage from the start in comparison to their peers who can hear and process speech efficiently.

Everything that is said or taught should be made accessible to all learners.

Differentiated work and homework is also essential, so that each child with APD and other additional needs can fully access the curriculum and meet their potential. This means the task should have SMART targets – specific, measurable, achievable and relevant – so that they don’t become overwhelmed leading to sensory overload.

Unfinished work should not be sent home. If properly differentiated, they should be able to finish it in class.

Some children with APD might also have dual exceptionalities, known as 2E. This means that they are gifted and talented learners with additional needs.

Both aspects need to be supported, and fully differentiated work is even more important for them. But challenging them, yet taking into account their additional needs, does not mean that their workload increases.

Learners with APD will often need support for tests and exams, known as access arrangements. They should all be assessed for this with regard to their APD – not their hearing, which often happens.

This must already be their normal way of working to be allowed an external test and exams, so this support must be implemented as soon as possible in class after diagnosis, both to qualify and for the learners to get used to working in this way.

They might need extra time for word retrieval and delayed processing, also to form responses, a quiet room to minimise distraction, and sensory breaks when needed. If they also have reading, spelling and/or writing difficulties, they might also need a reader, a scribe or use of a laptop.

Safety should always be a consideration with someone with APD, due to their inability to effectively process and remember verbal instruction.

Simply explaining things like sports, fire and swimming safety instructions might not be enough, because in someone with APD it might not be processed. Vital parts of the explanation might be missed and they might not register that they are available elsewhere to read.

Give them a typed copy with diagrams. Typed instructions for school trips need to be provided too.

A designated responsible safety buddy for children is also a good idea, to make sure that they are aware if there is an alarm, to keep an eye on them during swimming and sports or other activities, and alert a member of staff should the need arise.

For example, it is possible for someone with APD to swim downwards when they think they are going up. Traffic safety and the importance of looking both ways must also be emphasised.

Processing speech and extended periods of listening can be physically draining, especially when it is noisy and/or they are already tired, stressed or ill. Energy diverted to deal with these situations means that coping strategies can fail. Add headaches, stress, migraines etc, and it all falls apart.

Sensory overload is common, making the brain effectively shut down, so that no more information can be processed, understood or remembered. They can then become overwhelmed. Sensory breaks in a quiet place are essential to both prevent and relieve this.

Repeated failure is devastating to a child or adult, yet it is often required at school before a child receives any support. They know that there are things that they can struggle with and they might see themselves as different to their classmates.

They probably won’t know that this is simply because their brain works in a different way. They can blame themselves and they must be told that it isn’t their fault.

Children with APD and other additional needs can be criticised and ridiculed by teachers every day, for not understanding or getting something wrong or asking for help. They are blamed for something that they have no control over, and told they are not listening, not paying attention or simply not trying hard enough.

It happens far too often, even when the school knows they have APD. This is called bullying and children will copy a teacher’s behaviour, adding to the damage. It can happen to adults too in education and at work.

In a child with APD and other additional needs, confidence and self-esteem can be chipped away over time, and any joy that they ever had in learning can slowly be eroded. This can lead to anxiety, social anxiety, even depression, even in very young children. The damage can be lifelong.

If help is refused, a child will eventually stop asking. Left without adequate or appropriate support, a child with APD and other additional needs will become more stressed, anxious and frustrated.

This all adversely affects processing and a distressing cycle of misery can follow, often leading to emotional and behaviour issues. It can be unbearable.

The pop bottle effect occurs when a child with APD and other additional needs becomes stressed and frustrated with being unable to process and cope. They hold it in all day at school and then explode at home. This is normal and understandable, and they should be allowed to vent where they feel safe.

But the problem arises when they start to do this at school. Once a child is labelled as a behaviour problem, it can overshadow their other needs, which are then often ignored.

This can lead to school avoidance and even school phobia. The child can give up on struggling to learn, then the education system gives up on them, and that child’s chance of an appropriate education is over. There can be serious side effects on their physical and emotional wellbeing too.

An increasing number of children with APD and other additional needs now benefit from being home educated, or from education other than at school, because of their traumatic experiences, which can lead to post-traumatic stress. These arrangements can help some children enormously, as can professional counselling.

Support at home and from family and friends is just as important as elsewhere, even more so at any age.

Try to minimise noise, especially when speaking. Get their attention before speaking. Ask how they prefer information to be presented, repeated, rephrased or written down. Be patient and prepared to listen.

Allow them to vent about the frustrations of the day when they come home, then leave them to rest and relax. They might be in sensory overload.

Discourage a lot of activities after school and work if you can. Help to build confidence and self-esteem whenever you can.

APD can adversely affect all types of relationships at any age. Teaching children social skills can help, but enforced peer friendships should be avoided. Problems in recognising social cues means that people with APD can be socially awkward, and as such they can be socially vulnerable.

Interrupting a person with APD can mean they have to start again from the beginning. Some people with APD might also just use simple language and speak as they prefer to be spoken to, giving short sharp responses which can appear rude, or they might have a roundabout detailed way of explaining things or replying in case they forget something.

Some children and adults with APD prefer their own company to regular misunderstandings and arguments, and will actively avoid social contact. They find out early that the quality of their friends is more important than the number.

APD is usually incurable and lifelong. A child with APD will become an adult with APD, and there are no reliable therapies with proven long-term benefits. Maturation of the auditory processing system can improve things a little, but APD doesn’t usually improve after the age of 12 to 13.

There are certain situations that can be harder to cope with as they grow older. People with APD can find change of any kind very challenging and stressful. They rely on consistency and a controlled environment. Familiarity is comforting.

For example, moving to secondary school will mean many changes with more work, many new voices to get used to, added noise, stress and exhaustion. Also starting a new job, meeting new people, etc.

Then later in life, hearing and eyesight start to fail, and this can adversely affect coping strategies, making it seem like the APD is worse. However APD itself will not worsen without further damage to the brain.

But it isn’t all bad news. People with APD, like others with additional needs, often have compensatory skills and attributes developed from living with APD.

They can be resourceful, adaptable, resilient, determined and focused because they have to be. They can thrive when they use their strengths to work around their challenges, they are allowed to use their preferred learning style, and they receive appropriate and adequate support.

I’m sure you can now appreciate the complexity of APD, and because of that and the other additional needs that will be present, people with APD will have complex needs.

Things have come a long way since my journey started, but there is still a very long way to go to raise awareness of this disabling condition, also in its acceptance and UK-wide provision of testing centres and support.

With the right support, people with APD can and do succeed. They are not so much limited by their APD as by an ongoing lack of appropriate support and understanding about their condition. Please help us to change that.

If you think you might have APD or wish to learn more, please visit the APD Support UK website for further information.

If you know someone with APD, you can help them by sharing the APD Support UK website so they can learn about APD and how it affects them, and access the diagnosis and support.

The website provides further information and handouts on many of the topics discussed, along with our newsletters and links to our Facebook support groups. You’re welcome to join whichever group applies to you.

We also provide information every week on our Facebook page, Twitter, LinkedIn and Instagram accounts. You can contact me via the email address below.

And finally, I would like to thank Aniridia Network for this opportunity to promote greater awareness and understanding about living with APD. Thank you for listening.

My books about APD are available on Amazon, from Jessica Kingsley Publishers and other major bookstores, and they can also be borrowed from your local library.

Group Discussion

[Applause]

[James] So yeah, thanks to Alyson for that. And while recognising the irony of having you listen for extended periods of time while feeling drowsy after lunch in a darkened room… [Laughter] …any reactions? Anything you recognise? Disagree with?

[Bernie] A little bit I disagree with actually. It did sound contradictory what she said about… and I could see why she said it… about asking the child or the person.

Like I said earlier, if someone asks me “What did you understand of that?”, I don’t feel offended by that. And I think a lot of that is down to actually approaching things from the point of view of the person with APD. I don’t remember her saying anywhere ask the person what they need.

[James] Good point.

[Bernie] And I think that concerns me, because actually, if someone says “What did you understand?”, I don’t feel like I failed if I’ve misunderstood. And it’s about that person adjusting and changing, you know, shifting and changing how they approach that thing that the person hasn’t understood. And that wasn’t backed up as much as it could.

And it is about not making that person feel awkward or guilty about that situation. But that suggests that that has happened in the past to make people feel offended, if that question’s asked.

[Abbie] I was going to say, quite often sometimes if people ask me that, I then panic that they’re going to like get offended if I can’t tell them what I’ve understood, because I haven’t understood anything.

[Bernie] And I just say no, actually, I didn’t get any of that. So I think that bit needs a bit of work really. And yeah, it just felt very medical model to me. And I think that it would be nice if there was more involvement from people with APD involved with that.

[Abbie] I think a lot of it, though, I do agree with, and I’m like “Oh, that makes sense!” Quite honestly, I can’t give you an example right now, because I can’t remember.

[Bernie] But she did reinforce a lot of what we said earlier.

[James] Excellent, yeah. Anyone else?

[Lady 1] Can I just say that the book, Auditory Processing Disorder, is a really easy read. It’s aimed at professionals, parents and everybody, but I found it a really easy read. Some of those books you just get two pages and don’t go on, but I just sat and read it. It was very interesting.

But I do agree with what Bernie was saying, that you’re always going to have things that you think “well, that’s not quite right”. But it does give a very good picture of APD and what you can do, where you can go to.

So I do give her credit for it, that’s the white book on there with the green writing. It’s called Auditory Processing Disorder (APD) and it is reviewed on Aniridia Network’s website as well.

[Lady 2] Is it available in audio?

[James] I don’t think it is actually. But yes, if you click on the link on the Aniridia Network website, then we get a bit back.

[Bernie] Maybe encourage them to make it on audio. I know it sounds counterintuitive.

[James] I think it is on Kindle, so you can download it and get audio from Kindle.

[Bernie] Okay, that’s good, I can get Alexa to read it to me.

[Girl] Oh yeah, because I have APD. I found some of it was like quite relatable and stuff. And I think that it’s really good, just spreading awareness of it.

[Bernie] I think that there was a website actually.

[James] Yeah, the whole APD Support UK have got a whole website and Facebook posts and things.

[Andrew] Can I add as well, I was at the same conference that Bernie was, where Doris did the talk, and actually that was the same talk that got me to go and get diagnosed with APD as well.

That talk there is very generic to the entire APD spectrum. And where she is talking about giving it in an auditory form, she said using subtitles. Well, I can’t watch a telly with subtitles because of my visual issues. I end up spending so much time trying to read the subtitles and the subtitles are going so fast that I can’t read it.

[Bernie] Yeah, totally agree there.

[Andrew] I go into complete shut down.

APD is a spectrum. And most people with APD in this room, whether they know it or not, are going to have a vision impairment. So it needs to be adapted to them. So a lot of information that was within that probably won’t ring bells with them. But there will be aspects within it which should.

[Bernie] Yeah, I agree.

[James] And in many ways that’s similar with aniridia. Again, it’s a spectrum condition so everyone’s affected to different degrees and in different whites. So yeah, absolutely. Any one final point before we have a break?

[Lady 3] Just for those who do have a condition or diagnosis, how do you get on with audiobooks?

[Abbie] I’m very specific. So I use Audible and I have to always use the sample first, to see if I can process that person’s voice. So before buying the book I’ll listen to the sample. Sometimes I still can’t really get into the book and I have to restart the book multiple times to actually get it.

[Bernie] Yeah, I do the same. And you’ve got to be in the right mood to start a book. And sometimes I’ll start it and stop it if I’m just not in the right.

I think it is when you’re a bit sensually overloaded, if you start something when your head’s not in the right space, and I think it’s easy to give up at that stage. And sometimes I’ve had to think “Okay, I feel a bit clearer, the fog has gone out of my head now, I’ll start again.” And it can make quite a difference.

And you hear different things listening over and over. Listening to a book more than once, I actually get different info. It’s like reading a new book sometimes.

[Abbie] I also find I can’t sit still and listen to an audiobook. I have to be doing something practically with my hands. Even sometimes I do gaming whilst listening to an audiobook, because it’s the only way I can process it.

[Bernie] It’s just finding your thing, isn’t it?

[Andrew] To add to that, one of the things I find with the APD, this is me personally. It sounds very bizarre, because of the auditory context to it.

But if I’m actually trying to take something in visually – book, video or something – sometimes playing music which I like in the background actually helps me to process that information. I know it sounds really, really bizarre, but it works for me.

[Lady 2] I don’t think that’s bizarre.

[Man] I do something similar with meetings. So every day I have to go to a meeting at 12 o’clock, and I had my phone and I was just scrolling through photos. So I was literally just looking at pictures and all that sort stuff. And it helped.

I found that I was actually able to recall more of a meeting than I was without the photos, just sat there in front of the laptop looking at the screen.

[Bernie] I was saying earlier about those anchors, it’s like when you’re doing a task you can recall information. So it might be that you associate certain parts of that information with that bits of music and it’s like mentally you find anchors.

[Abbie] It’s almost like, for me, it’s a visual memory, ironically. So when I’m remembering a conversation, I remember it by what I was looking at at the time.

And I think that’s why gaming helps me whilst I’m listening to an audiobook, particularly things like Minecraft, because I do the creative mode and I think “Oh, I was building that house whilst we had that conversation.” It’s almost like a benchmark to remember what happened in that situation.

[Permjit] Can I ask a question? How would you go about getting referred? How would you know that you’ve got it?

[James] How do you get a diagnosis?

[Permjit] Yeah. Is it through your primary care team?

[James] Yeah, essentially you need a referral to one of these centres that Alyson mentioned. There’s more information on their website about how to do that. But as you said, it can be difficult to get that referral to the right places.

[Permjit] The reason I’m asking is because I know someone who actually fits. Everything that was said today fits. But the GP doesn’t know where to refer them to, because of the frustrations they’re feeling.

And everything about the diagnosis and about the different types, I’m thinking that fits that person. So why hasn’t this been picked up for them?

Because they’ve got a cognitive impairment anyway, and they’re autistic, and everything fits in with colour as well and being able to visualise something. Their creative streak is quite strong.

[Bernie] I think Alyson said that the links to where you can be referred to are on the website. I’m going to look for that as well.

[Permjit] Yeah, it’s not for me per se, but for someone who I know who actually fits. And because of the sheer frustration, when they came home as they were growing up, going into adulthood, they would take it out on their family, and the frustration was like a bomb had gone off. Really, really blue.

[Andrew] You have to be careful about who you have to ask as well. Because I’ve actually been to an audiologist, and the consultant audiologist says APD doesn’t exist.

[Bernie] I think people do think it’s one of those fluffy conditions that isn’t real.

[Abbie] Yeah, I went to an audiologist quite recently and she just kept calling it hearing loss, and I kept telling her it wasn’t hearing loss. And it’s quite frustrating when they don’t take take that on board.

[Bernie] You need a fact sheet, like a little card that you give people.

[James] Yeah, yeah.

[Bernie] Churn that in your machine.

[Laughter]

---

Thank you to Glen for the video editing and write-up.