Seeking recognition, diagnosis and support of Auditory Processing Disorder (APD) in the UK
We have started this petition to highlight the plight of sufferers of Auditory Processing Disorder and their families on behalf of APD SUPPORT UK.
The following is a brief account of our personal situation, followed by the facts of APD and what APD SUPPORT UK want from the government with regards recognition and support.
Our 14 year old son suffers with Auditory Processing Disorder (APD) this is an incurable, lifelong disability which according to the most recent professionally accepted definition, 'affects the way that the brain processes sound including speech'. In real terms, this means that people with APD have difficulty understanding and retaining spoken information. This has a profound impact on all aspects of our sons life and that of anyone else that suffers from APD. It impacts on communication and socialisation, education, career choices etc. People with APD need lifelong support at home and accommodations in school/college/university and the workplace.
Our son at home is a happy, caring, helpful child but in the school environment he is very unhappy, frustrated and stressed, a child that we do not recognise, this is due to the lack of understanding of the teaching professionals and lack of funding for SEN by the government.
As parents we are constantly fighting for our son to be able to receive the education he deserves. We feel as APD is an invisible disability it is not taken seriously and as such our son is being discriminated against by not being able to access the curriculum and so is being failed not just by the education system but by the government generally.
APD can occur in people with perfect hearing or hearing loss BUT it does not affect hearing which is why many hearing impairment organisations will not support it. APD affects everyone uniquely and with varying severity, and each sufferer will need individually tailored support.
- APD has an often profound impact on all aspects of a person's life in the areas of communication, socialisation, education, career choices etc. People of all ages with APD need lifelong support at home, and accommodations in school/college/university and in the workplace.
- APD can occur in people with perfect hearing or hearing loss but it does not affect hearing, which is why the hearing impaired organisations will not support it.
- APD affects everyone uniquely and with varying severity, and each sufferer will need individually tailored support.
- APD can affect people randomly and intermittently, with effects that fluctuate widely even during one day or one hour – which is why it is difficult for people to accept that a sufferer can understand speech at one time and not another, and which makes APD one of the ‘invisible disabilities.’
- APD has been estimated to affect up to 3% to 5% of UK children based in a population of 60 million (birthdate 13 per 1000, according to the latest research, without taking into account undiagnosed adults) and it has been identified as being one of the main causes of dyslexia (known as auditory dyslexia) with research ongoing in that area.
- APD can be identified from an early age and it is diagnosed from the age of 7. The leading centre of excellence in the UK is the APD Testing Centre at Great Ormond Street Hospital, London and the only professionals qualified to diagnose it are specialist audiologists.
- With a prevalence rate of about 5%, about 31,250 testing slots are needed a year for the whole country (which means we need at least 125 centres seeing about 250 patients a year). Currently GOSH can only test a handful of NHS APD patients a week and their waiting list is 18 weeks long - mostly from parents researching it themselves and seeking referral, because so few professionals even know about APD. With increased awareness of APD, we see that the waiting list and the need for more testing centres will increase exponentially.
- In addition to those diagnosed with APD, about 30% of those tested who don’t meet the criteria for a full APD diagnosis are diagnosed with auditory processing issues of difficulties, which still need the same support.
- APD is thought to be neurological in origin, caused by damage to the brain. It is often inherited, with a genetic cause, and is therefore present and often noticeable from birth – if a child appears hard of hearing yet hearing tests show no hearing loss, that is a primary indicator. In some children, it can affect the acquisition of speech – another indicator (if a child cannot adequately process speech sounds, they will not be able to effectively reproduce them - which can lead to dyslexia issues in some children).
- There are many other difficulties and many possible acquired causes, such as: frequent ear infections leading to glue ear; head injury; brain damage from epilepsy or other injury; maternal drug or alcohol abuse or other damage in utero or at birth; also there have been links to other conditions such as ME and Down's Syndrome and many other possible causes are still being identified. The cause makes no difference to its effects, or how it is supported.
- APD rarely exists in isolation. People with APD usually have other co-existing yet unrelated invisible disabilities to deal with too (seen in about 90% of those already presenting for testing) which can make coping with APD even harder, because the conditions impact on each other and compound the difficulties of APD and vice versa e.g. Visual Processing Disorder, Tinnitus and/or Hyperacusis.
- APD even has some apparent characteristics in common with other invisible disabilities (ADD/ADHD/Autism/Sensory Processing Disorder), which makes it harder to isolate and identify and APD can be misdiagnosed or it is missed entirely by being masked by other possible conditions.
- APD does not affect intelligence. In fact those with APD often have amazing compensatory gifts.
- People with APD can lead happy, successful lives, using their gifts and strengths – but only if they have recognition, validation, acceptance, accommodations and the right sort of support, which most of them currently lack.
a. There has been diagnosis for APD available in the UK since 2004 (at GOSH, see links section below).
b. APD is acknowledged 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.
c. The NHS has a web page about APD (see links section below) - yet is still not fully recognised and supported by all medical professionals in the UK; most audiologists, GPs and paediatricians are unaware of its existence.
d. The British Society of Audiology has a special interest group to study it (see links section below)
e. The Medical Research Council Institute for Hearing Research funded the research that led to the testing being introduced on the UK.
Yet APD is still not widely known or recognised in the UK; support is sparse and parents, children and adults with APD have to fight against the medical, education and benefits systems daily, for what should be automatic.
Some other hospitals around the UK test for APD, but do not provide the level of testing available at GOSH. There are private assessors ‘testing’ for APD who don’t even use approved tests, who claim to ‘diagnose’ auditory processing difficulties (which is not a diagnosis of APD) and are selling programs and therapies (which are extremely expensive and none of which have been scientifically proven to have any great or lasting benefit, according to the British Society of Audiology). Everyone with APD is affected uniquely - especially considering their individual level of severity, co-morbid conditions and coping strategies - which is why a one-size-fits-all approach will not work. Children have even been tested by private assessors and told that they didn’t have APD, only to be diagnosed on assessment at GOSH with severe APD. That is why standardised testing and diagnosis to the level which is provided at GOSH is urgently needed UK-wide, as well as professional monitoring to stop misdiagnosis, ineffective testing and unscrupulous people taking advantage of vulnerable families.
Accurate early diagnosis of APD is essential, but diagnosis is just the start. Early diagnosis means that support is implemented sooner and development of coping strategies can be encouraged earlier, so the child has a better chance of educational achievement (particularly as the auditory processing system of the brain is not fully developed until age 12/13). APD does not affect intellect and APD is not a learning difficulty - it causes them, among other things. An EHC Plan is vital for each child with APD to secure the help they need throughout their education - because without it, schools fail to provide it. Immeasurable damage is currently being done by professionals in the field of education, who fail to acknowledge APD, and as a result, adequate support is being denied to most children with APD. This is due to ignorance about this condition and/or reluctance/failure by educational professionals (teachers, SENCOs and Educational Psychologists and LEAs) to acknowledge and support APD, even when valid diagnosis is obtained and specialist reports are provided.
Supporting any child suspected of having APD pre-diagnosis can have a huge benefit too – by putting in place ongoing individually tailored strategies, just as if the child had a diagnosis of APD, especially as a child can be suspected of having APD at a very early age and cannot be tested till age 7. The effects of APD become worse as children move to secondary school and beyond, when work demands are greater and stress makes the effects of APD worse (as does illness and tiredness), so more support is needed. Cost is not usually a factor in supporting a child with APD – in fact, most accommodations for APD cost nothing; they are just good teaching.
APD cannot be cured, so sufferers need to learn to live with it and get around it, by using coping strategies, utilising their own unique gifts and skills, learning style and strengths. Self-advocacy skills are vital for someone with APD - the ability to know how it affects them as an individual and being able to ask for the unique accommodations that they need and are legally entitled to receive. Also essential is acceptance by family and friends, which can be absent when it is so infrequently recognised and validation is denied. If unsupported at school APD can cause the sufferer extreme stress and people with APD often develop anxiety or depression - even children - which cannot be allowed to continue. APD can be devastating to a child’s education and their socialisation and future career prospects and without support this situation will not improve as they get older. If misunderstood and unsupported, it can lead to a life of isolation and misery. Self-esteem and confidence are often affected too, through constant failure, bullying and disability discrimination. APD is a disability for life and a child with APD will become a teenager with APD, with a different set of problems to deal with. The teenager with APD will become an adult with APD, needing individually tailored accommodations and support in further education and seeking, finding and maintaining work. Also they may need support in navigating the benefits system, because even with qualifications, which some may not have, discrimination still exists amongst employers once you declare you have a disability that needs reasonable accommodations - no matter how capable the candidate might be with a little support which they are legally entitled to.
A person with APD needs to learn to live with APD, to get around it, but will still need lifelong support depending on its severity and their other co-existing conditions. Someone with very severe APD can be effectively incommunicative - unable to process speech at all, or reproduce it (one of the reasons it has been often misdiagnosed as autism). APD is not autism; it is not linked to or caused by autism, it does not come under the autistic spectrum ‘umbrella’– APD is a stand-alone condition.
To meet the needs of each individual with APD, uniquely tailored accommodations are essential, in education and at work, in all areas of their lives. Adults can also acquire APD in later life and will also need specific support. Please raise this issue in Parliament so that APD can be recognised and dealt with as the disability it truly is, and ensure that adequate help and support is provided - it is the legal right of every individual in the UK with APD, and the UK is failing them.
We are asking for legislation and government funding to be put in place for:
1. Auditory Processing Disorder to be fully, routinely and mandatorily recognised as a disability in the United Kingdom by all schools/colleges/universities, medical and educational professionals, NHS Trusts, LEAs, employers, benefits agencies and support agencies;
2. Standardised testing and diagnosis, to the level of that provided at the APD Testing Centre at Great Ormond Street Hospital, London (children) and University College Hospital, London (adults) to be routinely and mandatorily provided at NHS APD testing centres, available to all, UK-wide;
3. Training of more specialist audiologists to provide such testing, with testing standards to be professionally monitored for accuracy, and impartiality from funding by therapy providers;
4. Full support and all appropriate individually tailored accommodations to be routinely and mandatorily provided at schools and in further education, recognition for the need for APD support via EHC Plans, providing every child and adult with APD in the UK access to what they currently do not have, namely:
"efficient full-time education suitable -
(a) To the individuals age, ability and aptitude and
(b) to any special educational needs they may have'' according to the Education Act 1996.
5. Full support and all appropriate accommodations to be routinely and mandatorily provided for adults with APD at all job centres, benefits and support agencies and by employers - according to the Equalities Act 2010 and article 44 of the European Convention.
Failure to do so, which sadly is the status quo, is disability discrimination. People with APD in the UK have the right to the same level of support as any other disability.
We are asking if you could sign the petition so that people with APD can be given the recognition, respect and support needed to enable them to have full and productive lives.
We want to raise this issue in Parliament so that APD can be recognised and dealt with as the disability it truly is, and ensure that adequate help and support is provided - it is the legal right of every individual in the UK with APD, and the UK is failing them.
APD SUPPORT UK
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