WHAT IS APD?
Auditory Processing Disorder or APD is an incurable, lifelong disability that affects the way that the brain processes sound including speech. It is thought to be caused by neurological damage and is therefore a medical disability not a learning difficulty - it causes them. Children with APD will become adults with APD, and depending on severity it can have enormous negative impact on all aspects of life, particularly education, communication, socialisation and relationships, and seeking and maintaining employment. Even those mildly affected will struggle.
APD is an invisible disability which can occur in people with perfect hearing or hearing loss. APD affects everyone uniquely and with varying severity, and it rarely exists in isolation - there are usually any number of other unrelated co-morbid conditions with reciprocal impact, which will also need diagnosis and support. APD even has some characteristics in common with other invisible disabilities, which makes it harder to spot, so misdiagnosis is common, or it is missed by being masked by these other difficulties. Recent US research has indicated that APD affects up to 5% of children worldwide, as well as many undiagnosed adults. APD is thought to be one of the main causes of dyslexia (what is known as auditory dyslexia, affecting acquisition of phonics discrimination - which can also affect speech, is caused by APD via the inability to accurately process and remember speech sounds/phonemes.)
APD affects everyone uniquely and with varying severity. It can affect people randomly and intermittently, with fluctuating effects even during one day or one hour. APD is often inherited and there are many other acquired causes, such as frequent ear infections leading to glue ear, head injury, brain damage from epilepsy, drug or alcohol abuse, damage in utero, effects from other conditions such as ME and Down's Syndrome etc. - and causes still unidentified. It can be acquired at any age and there are many adults with late onset APD due to illness or injury.
Accurate early diagnosis of APD is essential - and the leading centre of excellence in the UK is the APD Testing Centre at Great Ormond Street Hospital/GOSH in London. APD testing is currently undertaken there from age 7. But one centre of excellence for the whole UK is not enough - we need accessible, standardised testing UK wide. Diagnosis is just the start. Early diagnosis means that any intervention and development of coping strategies have a better chance of success the earlier they are implemented, before the auditory processing system of the brain is fully developed at age 12/13. APD cannot be cured, so you need to learn to live with it and get around it using coping strategies, utilising your own unique gifts and skills, learning style and strengths. Self advocacy skills are also vital for someone with APD - the ability to know how their unique pattern of APD affects them as an individual and how to ask for the unique accommodations that they need and are legally entitled to receive (and what to ask for). These accommodations are essential for a child with APD to be able to access an appropriate education. Also essential is acceptance by family and friends. APD is a disability for life and a child with APD will become an adult with APD. The sufferer will need to learn to live with APD, to get around it, but will still need lifelong support depending on its severity. To meet each individual's particular needs, uniquely tailored accommodations are a lifeline, at school and at work. APD also rarely exists alone, so further testing is needed, to identify every other condition that affects each child and impacts on the APD.
APD has been diagnosed in the UK since 2004; it is acknowledged as a recognised medical condition by the World Health Organisation and has a classification of the International Classification of Diseases (ICD) (which lists conditions too) - under the section ICD 9, as ICD-9 388.45 and ICD-9 388.40 and the Medical Subject Headings as MeSH D001308.
Sufferers of all ages need lifelong support at home, and accommodations in school/college/university, in seeking benefits, finding work and in the workplace. Some APD sufferers (both adults and children) are eligible to apply for ESA, PIP/DLA and Carer's Allowance where the effect on their lives is present most of the time and is substantial, and in some cases it can pose risks to safety in certain situations – and the CAB can advise on applications - yet APD is still not fully recognised and supported in the UK. In short - APD can be devastating to a child’s education, communication, socialisation and future career prospects. It continues to affect adults throughout their life and affects all aspects of a person’s life. It needs to be recognised as the often devastating disability that it truly is, and adequate help and support must be provided, as is the legal right of every child and adult in the UK - not to do so is disability discrimination and where there is failure to support at school, cases of educational negligence have been fought, and won. Please do your part in supporting those with APD.
- Please follow this link and sign the petition here seeking UK-wide APD recognition, UK-wide access to full testing and diagnosis and full support for children and adults in the UK.
- Keep sharing the information on this website.
- Teach self advocacy skills to your child and develop your own as a parent, advocate or adult with APD.
- Be accurate when you explain APD to people - other people can't be expected to know about it or understand it unless you tell them and explain.
PHRASES TO AVOID WHEN EXPLAINING APD
Sometimes people use incorrect explanations in order to deflect questions or give a quick answer - doing this actually harms the efforts of everyone struggling to gain awareness of APD.
- APD is NOT a hearing impairment - hearing is not affected by APD.
- APD is NOT a listening problem - people with APD listen perfectly well; their brain just doesn't process what they hear/listen to.
- APD is NOT an attention problem - people with APD must pay full attention to have a chance of being able to process anything - it is exhausting and often their brain still lets them down
- APD is NOT auditory dyslexia or 'like dyslexia for the ears' - auditory dyslexia is a term used for a type of reading/spelling problems which is caused by APD, but the term doesn't describe APD and it reading/spelling problems don't affect everyone with APD (and their ears work perfectly well!)
RECOMMENDED SIMPLE EXPLANATIONS:
- APD is a condition where the brain has problems with processing sound including speech.
- APD makes it difficult to understand speech and remember what people say.
WHAT IS 'APD SUPPORT UK' ABOUT?
The aim of the APD Support UK website is simply to provide information about Auditory Processing Disorder/APD. This website is for anyone who has Auditory Processing Disorder/APD or suspects it, and wants information on this subject - for adults, teenagers, children, families, friends, professionals, and anyone else who's interested in learning more about APD. Although based in the UK, this website provides information to everyone, everywhere - APD is a global condition.
On our information page,
there is specific information about APD testing in the UK, coping
strategies, research etc. - all free for you to print off and share.
There is a links page, with links to further APD and other invisible
disabilities information, also to my UK and international support groups
- for parents, adults with APD and teenagers and young adults with APD
and interested professionals - and groups providing APD support.
My name is Alyson Mountjoy. I already have many years experience as co-founder of APDUK - a UK voluntary organisation supporting APD sufferers and their families. It was founded in in 2002 and I was Chair for 9 years (initially acting as Vice Chair for 3 years before that) and I co-ran its APD support helpline for several years. Also I was editor of its newsletter - copy editor for issues 1-6 and graphics and copy editor for issues 7-11, up until Autumn 2014 when I left APDUK.
I am owner of several APD support forums and I maintain regular contact with both UK and international professionals and research projects. I have years of experience and qualifications in working in special needs education, first working at a residential school for pupils with emotional and behavioural difficulties, then supporting secondary school age learners with Specific Learning Difficulties (in particular severe Dyslexia) as a special needs support assistant at a resource based secondary school. I also have extensive experience in administration and desktop publishing and a qualification in counselling skills. I am also a qualified complementary therapist and author.
A lot of the information on this website which is copyright to APDUK is contained in handouts that I wrote myself while I was Chair. I have added more of my own articles and information sheets on the information page of this website, and even more will be added over time! You are free to use it as you wish, as long as you respect the copyright to me or to APDUK and retain it when you print anything find on this website. There are many of my articles in the APDUK newsletters.
Sadly APDUK no longer exists; but its ethos remains. I will continue raising awareness of APD, providing support and information and campaigning for recognition of APD and UK-wide standardised diagnosis and accommodation UK wide; those things should be an automatic right for all, not a privilege. Please do your best to spread the word, by sharing the information on this website, signing petitions, lobbying for recognition and raising awareness in any way you can. Your children and theirs will thank you for it - because APD can run in families.
ADULTS WITH APD RESEARCH
For several years I have been involved in an international research project on the socio-psychological impact of APD on adults, with APD with Dr Damien Howard, an Australian psychologist from Darwin - the first of its kind worldwide. This research, based on international online chats with adults with APD, has led to many articles for the APDUK newsletter, both as sole and joint authors. These articles, as well as other information and articles, are available to download from my Information page.
Children with APD will become adults with APD. We feel that parents can learn a lot from adults with APD to help their children. By anticipating and pre-empting the problems experienced in adulthood, they can better prepare their children by teaching them the strategies that adults use for the issues they already face.
Past research articles are available on this website as part of the former APDUK newsletters. Any future research findings will be published his website.
Please contact me if you need detailed information regarding information for yourself, your child or a person with APD (or suspected APD) in your care as an educational or medical professional.
Email me here: APD.Support.UK@aol.co.uk
I have several UK and international Facebook groups for adults with APD, parents, teenagers and young adults with APD. If that's you, you are welcome to join - as are any interested and supportive professionals. The focus is on living with APD and I do not allow selling of any sort, or promotion of any therapies/medications/supplements that claim to cure APD. If you want to join, please be prepared to respect those rules - and other members - or your membership will be terminated. Everyone has their own journey.
NEW APD PRESENTATION AND NOTES
You are welcome to use this presentation and accompanying notes, along with the new 2017 GOSH criteria.
The notes can be used to explain to your child's school about what it means for your child to have APD, and why tailored support is vital. They can be used with the presentation, but don't use the presentation alone as it contains headings and very little detail. The notes should be given as presentation handouts along with the GOSH criteria (below). You can of course use the notes and presentation as a basis for your own notes and/or presentation, so long as they aren't copied word for word. You can also add your own comments on a separate sheet or in your verbal comments to explain how your child is uniquely affected - which is advised. All I ask is that anyone printing and sharing the presentation and notes to please retain my name and copyright, and print and use the documents unchanged.
N.B. Please direct any enquiries about GOSH criteria to the contact listed at the top of the criteria document itself.
NEW - 12 APD Reminders
12 colourful A4posters taken from slides in the presentation with one line reminders on the impact of APD on education. These can be printed and distributed separately from the presentation notes or as an accompaniment to the information sheet, or as additional presentation handouts.
NEW - What is APD
A one page document - a quick read for those who only have time for the basic points. It contains the information about APD on the front page of this website - which you can take to inform your child's school about APD, or to use when seeking referral; it also has a link to this website and one to the GOSH APD information page.
More new information sheets and articles on APD are available on the Information page.
© Alyson Mountjoy
APD and its implications - Notes -FINAL.pdf
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APD Presentation- APD and its implications.ppt
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GOSH criteria for APD clinic 03.01.17.pdf
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12 APD REMINDER POSTERS.pdf
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WHAT IS APD.pdf
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