KidsAudiologist

Archive for the ‘special educational needs’ Category

Today marks @KidsAudiologist‘s first anniversary using Twitter (I’m not sad enough to mark this in my calendar – some app reminded me – honest!) It’s been an interesting and enlightening year, and I have thoroughly enjoyed it!

When I first had a look at what it was all about I was fortunate to stumble across an expert in @SLPTanya and can highly recommend her fantastic blog on using Twitter as a professional resource in the field of Speech and Language practice. I soon found out that the SLTs (in the UK) and the SLPs (all around the rest of the world) were very actively using Twitter including their professional organisations such as @CASLPA and @RCSLT. The SLT/SLPs are using Twitter to ask questions of the wider S&L community, share resources and hold regular Twitter ‘chats’ (@SLPChat) on specific topics.

If you look for them you will also find a large number of audiologists, mostly from the USA but a few in the UK, who are also using Twitter. The community was much smaller and much less engaged. I suspect that there are many who are lurking and reading Twitter a lot, there are also some who primarily use Twitter to broadcast information or advertise their private practices, but mostly they aren’t chatting much. In my specialism of paediatrics there are a tiny number of Twitter users. But throughout the year I have had some chats with fellow #AudPeeps and it’s definitely growing. The small number that are using Twitter are becoming more engaged.

Once I decided to get started I had two goals. I loved the idea of developing a Personal Learning Network  that the SLT/SLPs were modelling so well. For a first year I have been amazed at just how much I have learned. It is a fabulous forum for sharing links to interesting research and on a few occassions I’ve received really helpful responses to random audiological questions. It’s also an amazing tool for interacting with conferences going on across the globe that I’d never get the opportunity to actually attend (an example of a tweet story compiling conference tweets after the event so that they can be kept include CASLPA 2011 and a collection of ones’s I’ve tweeted from this year). My second goal was to see if it would be a useful forum for sharing and getting others involved in my NDCS work. I think the answer to that one is possibly but is not being used to it’s full potential yet. It’s enabled me to link up with other organisations and build contacts – things we could have done in other ways but seem to have worked very effectively through Twitter. However, I have been surprised at the wider community that have become my followers and this includes lots of parents of deaf children. And this group has actively used Twitter to contact one another and to ask questions. So although unexpected early on, I’ve been really pleased to get this opportunity to chat with families about their experiences and help when I can.

Thanks to all my followers (686 at latest look). I am looking forward to the next year and seeing how use of the forum evolves. Tweet me!

I wanted to share a couple of excellent articles by Dr Carol Flexer, Ph.D. on the importance of early hearing aid fitting and use, & associated development of the auditory brain…

“Hart and Risley (1999) studied children from professional families and determined that they have heard 46 million live-spoken words by age 4. This is the magnitude of practice that is critical. This speaks volumes to the fact that less than every waking hour of technology use will not cut it for children with hearing loss. Dehaene (2009) talked about the listening basis for reading, and children with hearing loss require three times the exposure to learn new words and concepts because of reduced acoustic bandwidth compared to typical hearing peers.”

The Auditory Brain: Conversations for Pediatric Audiologists (2011)

“Robbins et al. (2004) found that skills mastered as a course of normal development result in developmental synchrony. Therefore, it appears we are pre-programmed to develop specific skills during certain periods of development. If those skills can be triggered at the intended time, we will be operating under a developmental and not a remedial paradigm. That is, we will be working harmoniously within the design of the human structure.”

Neuroplasticity is greatest during the first 3 ½ years of life; the younger the infant, the greater the neuroplasticity. Rapid infant brain growth requires prompt intervention, typically including amplification and a program to promote auditory skill development. In the absence of sound, the brain re-organizes itself to receive input from other senses, primarily vision; this process is called “crossmodal re-organization” and it reduces auditory neural capacity. Early amplification or implantation stimulates a brain that has not yet been reorganized, allowing the brain to be more receptive to auditory input resulting in greater auditory capacity.”

Auditory Brain Development: The key to developing listening, language and literacy (2012)

More than 9 out of every 10 chldren born with a hearing loss have hearing parents. It’s therefore entirely natural that early on they are going to ask “What can my child actually hear, what does it sound like for them?” They share a need to try and get to grips with this as part of the process of understanding what they need to do to help their child. It is a very difficult question to answer. Some of the things we know at this stage include the degree and type of deafness: we know how much volume is lacking for a mild (20-40dB), moderate (41-70dB), severe (71-95dB) or profound (95+dB) hearing loss, and we know that loss of hair cells in sensorineural hearing loss means that some natural processing that happens within the cochlea is lost – including the cochlea amplifier, pitch discrimination and the ability to recognise different sound levels (reduced dynamic range). We also know a good amount about the benefits and limitations of various types of hearing technologies that are used. Now more than any time in history, we know that almost all deaf children can perceive the full range of speech sounds with their hearing aids or cochlear implants. But we also know that they can’t do this as easily as hearing children and that no hearing technology can replace normal levels or quality of hearing.

So it’s relatively easy to mock up some simulations of what a hearing loss might sound like using some software to reduce the overall level of sound and filter out some of the frequencies that make up speech sounds. There are some good ones available online and my favourite is the Better Hearing Institute which has mild and moderate hearing loss in different situations. The NDCS also have a couple of examples that are specific to children in classrooms.

But there is a health warning about these simulations and that is that we don’t know, especially in the early days following diagnosis in young babies, what is happening beyond the ear and how well they can make sense of the sound they hear. Hearing, listening and understanding are sophisticated processes that are determined by a complex interaction between the physical properties of the ear as well as attention, memory and auditory processing (what happens when your brain recognises and interprets sound so that it becomes meaningful). The brain has the incredible power of plasticity in the early years and is continually moulding and learning from new experiences and sounds. As adults the brain is much less plastic and it takes much longer to adapt. This means that the experience of hearing and listening is hugely variable between individuals and is influenced by whether someone is born deaf or what age they became deaf, how long it was between developing a hearing loss and being fitted with hearing aids, their listening experience, and their cognitive and auditory processing abilities. Children born deaf and those who become deaf early in life experience deafness as the norm. Older children, teenagers and adults who become deaf have a very different experience of deafness to which they need to psychologically and physically adapt to. Much of what we understand hearing loss to sound like comes from adults who have previously experienced normal hearing levels. This is a particular issue when parents are considering a cochlear implant for their child for example. It is commonly reported that cochlear implants sound electronic, that they aren’t natural, and that voices sound like ‘a Dalek underwater’. This can be a devastating idea for parents considering this option but in fact when you speak to these same implanted adults later on they describe their implants as sounding very natural as their brain has acclimatised to the new sound. I recently chatted with a group of teenagers who all used cochlear implants and they agreed – “people think they sound like robots, but they don’t”. Just from listening to the voice quality of the thousands of implanted children, we can be certain that they do not experience this kind of ‘electronic’ sound. But to listen to this type of electronic simulation the best one I’ve found is Scientific American Frontiers.

Auditory Neuropathy Spectrum Disorder (ANSD) affects approximately one in 10 deaf children and causes distortion of sound and difficulty discriminating speech over and above what we would expect from the hearing loss alone. The level of distortion is highly variable from very slight to very severe and it is not measurable. So in young children we do not know early on how it will affect their speech and language development. Simulations of ANSD from mild to profound neuropathies can be heard here and make scary listening but again we know that with the right intervention children with ANSD are successfully using their hearing and using spoken language.

There are 10 million people in the UK have some degree of hearing loss and the majority of these people experience age-related deterioration of hearing. At the other end of the age spectrum there are just 45,000 under 18’s with a permanent hearing loss. Inbetween there are those adults who grew up with a hearing loss as well as those who have lost their hearing as an adult. My experience is that individuals (and their parents or family) use a wide variety of terms to describe their hearing level – deaf, hearing loss, partially hearing, hearing impaired, hard of hearing – and they rarely relate to their audiogram level. There are those people who associate themselves culturally with the Deaf community who we may traditionally think of as those who are profoundly deaf sign-language users. But there are also people who have developed a mild hearing loss for the first time who may tell their audiologist they are ‘stone deaf’ or ‘can’t hear a thing’ and this is their perception compared with their normal experience.

Every child’s hearing levels and hearing experience is unique and it is impossible for these types of simulations to represent how all deaf people process and experience sounds heard. But they are useful in giving the listener an understanding of the difficulties encountered and I particularly like those that can highlight the big differences experienced between listening in quiet and noisy environments and which are an important reminder of how much easier we can make life for children by improving their listening environments in school and elsewhere.

This weekend I had the priviledge to be invited to the final residential weekend for the current NDCS Youth Advisory Board (YAB) cohort. Wow, I mean just wow, what an amazing bunch of teenagers! I was doing some filming with them on retubing earmoulds, using radio aids with other equipment, and their experiences with cochlear implants, and the films will appear on the NDCS Buzz website soon. I had the chance to have a chat with some of them and had a read through their memory books of their year but you can have a read of their new blog for more details of the weekend.

But my main memory of the weekend will be about communication. These teenagers had a range of hearing losses from mild to profound; most were using a range of technology including hearing aids, cochlear implants and radio aids; and most had identified themselves as using one main communication preference prior to joining the YAB. In the last 20 years or so I have often walked into a room full of deaf kids signing with one another and this was no different. But some of these kids hadn’t signed a year ago at all – they had learnt it so that they could all communicate easier with one another. At the same time they almost all used spoken language and effortlessly switched depending on who they were chatting to. They were so flexible – it was much less about their own communication needs, as them adjusting to others communication needs! One of the teenagers had taken her mock oral GCSE in German last week, and another had passed both GCSE Japenese and BSL Stage II in the same year.

None of these kids are ‘mine’ or had been seen in my clinic but they all made me very proud to be an audiologist. There has never been a time in history when deaf children and young people had as many options, choices and opportunities available to them, thanks in part to the technology they’re using.

Just occasionally paediatric audiologists, particularly those who work in cochlear implant programmes, will meet a child who has been born without cochlea or auditory nerves, or other abnormality of the inner ear that makes a hearing aid or cochlear implant useless. This diagnosis has just been given to the parents of a 4 month old boy and other parents in the same situation have shared their experiences on the NDCS Parent Place forum. This must be devastating for parents who have held out hope for a technological miracle that will help their little one access hearing and speech. Some parents have been researching the option of an auditory brainstem implant (ABI).

An ABI works in a similar way to a cochlear implant and in fact the external parts look just like a cochlear implant. But instead of electrodes inserted into the cochlea, the electrodes stimulate the auditory brainstem directly, bypassing the ear and auditory nerve. This makes the procedure more invasive than that for a cochlear implant.

ABI’s are used most often for adults who have suffered trauma to their hearing nerve which means that it is no longer useful and Manchester Cochlear Implant Programme have implanted more than 50 adolescents and adults in this group. Trauma usually occurs during surgery to remove a tumour from the hearing nerve. Once the hearing nerve has been damaged in this way the person would not benefit from hearing aids or a cochlear implant because the sounds could not transfer from the ear to the brain along the nerve. ABI has only been used for adults who have previously had hearing and use speech to communicate. Where a cochlear implant stimulates different points corresponding to different frequencies along the cochlea, the brainstem does not have this separation of frequencies so the ABI cannot separately stimulate different groups of nerves corresponding to distinct frequency ranges. The ABI therefore provides a sensation of hearing that can help aid lip-reading and provide other clues used in spoken communication (for example rhythm and speed of speech) but these adults are unable to use the ABI alone to hear speech without the additional help of lip-reading etc.

Although ABI’s have been available in the UK for the last decade only a handful of children have had the procedure here. The outcomes for children are more variable than for children who use a cochlear implant – they may only offer access to louder and environmental sounds although some are accessing speech. Like cochlear implants the emerging evidence is that the earlier implantation takes place, the better the outcomes for the child. ABI’s have been used in cases when there is no cochlea (and therefore nothing to implant with a cochlear implant), when the cochlea has suffered extensive damage (such as following meningitis) and an electrode can’t be inserted into the cochlea, and when there is no auditory nerve.

It is understandable that most hearing parents opt for cochlear implants for their deaf child – opening up options for their child to develop spoken language as well as BSL and potentially other languages too. For parents of children in the ABI candidature group it appears that most have instead been opting to concentrate on developing British Sign Language as their child’s first language without technological intervention but there is increasing interest in the option of an ABI.

Further information on auditory brainstem implants including further reading links and research go to the NDCS webpage.

Updates and family stories

Hope for Hearing is a trust that was set up to raise funds for 22 month old Evie’s ABI which was implanted in Italy in June 2012. You can read more about her story and her family’s experiences of the assessment and surgery etc.

amazing amelia had her ABI at 2 years 8 months. Read her blog and watch videos of her progress.

The Fight for Finn is a trust that was set up to raise funds for 18 month old Finn’s ABI which was implanted in Italy in July 2012. You can read more about his story and his family’s experiences of the assessment and surgery etc.

Read Oliver Bosche’s story on the MailOnline on watch him on STV “Deaf toddler hears for the first time after pioneering treatment” in April 2013

Read Danny Pickards story on the MailOnline from February 2014 and his website Help me Hear

I tend to shy away from polictical commentary but there are massive changes afoot as part of the coalition government’s NHS Reforms  and there is a statement that we keep hearing claiming that the previous Labour government had 13 years (1997-2010) to improve the NHS and failed to do so, and I’m taking issue with this. I can only talk for children’s audiology in England but for those who weren’t working in, or using their NHS audiology service during this time you might be interested in some of the hugely significant changes that took place during that time…

Modernising Children’s Hearing Aid Services (MCHAS)

Between 2000 and 2005 the government invested in Modernising Children’s Hearing Aid Services. MCHAS was a research and training programme which introduced digital signal processing hearing aid technology into the NHS. During this period all audiology departments in England received funding for new equipment and training so that now all children are routinely fitted with digital hearing aids. Alongside the introduction of new hearing aid technology, new fitting procedures and working practices were introduced. Guidelines covering these procedures were written and are now accepted by the profession as standard quality practice.

Newborn Hearing Screening   

The roll-out of newborn hearing screening in England was announced in December 2000 and from March 2006 all babies in the UK were offered a hearing screen within a few days of birth. During this time the average age of diagnosis of a baby born deaf fell from 2.5-3.5 years of age to just a few weeks of age, massively improving the opportunitites for early intervention and establishing effective communication early.

Early Support

Early Support was a Government funded programme from 2002-2006 involving the Department for Education and Skills, Sure Start and the Department of Health. The purpose of the programme was to improve the delivery of services to disabled children under three and their families across England. Recognising that the needs of families and children are very diverse, as is the range of professionals from health, education and social services who are involved, the interests of deaf children and their families, as newborn hearing screening was gradually introduced across the UK were at the heart of the programme. Some resources now available from the Early Support programme include a service audit tool, a range of disability-specific information booklets for families (including deafness), the Common Monitoring Protocol – a developmental journal for recording the details of a deaf child’s milestones, and materials for families and professionals on making informed choices.

Waiting times

The last government made a pledge to reduce the amount of time patients waited for treatment to less than 18 weeks by December 2008. The “18 Weeks target” covered pathways that involved or might involve medical or surgical consultant-led care and so initially hearing aid services weren’t included and suffered as finances locally were diverted to meet the target together with increased demand for services led by MHAS (the adult equivalent of MCHAS above). The Health Select Committee (2007) heard that the average waiting time for first hearing aid fitting was 41 weeks rising to 2 years in some places. The committee was persuaded of the need to include hearing aid fittings in the waiting time targets and made recommendations to the government.  The government responded that they had “no plans to revisit the scope of the 18 Weeks target but have been clear with the NHS that no local health system will be credible in claiming success on 18 Weeks if it does not make excellent progress in tackling long waiting times affecting large numbers of its local population, including those waits that are technically outside the target”, but followed up with the Department of Health-led Audiology Improvment Programme including a series of “Transforming…” documents on different aspects of the audiology service and patient pathways. To everyone’s credit in audiology services everywhere, as well as those working for the Department of Health teams, the 18 weeks target was met by the majority of areas by the December 2008 timeframe with some continued work with ‘challenged sites’ during 2008-9. NHSP Quality Standards made it clear that hearing aids should be fitted within 4 weeks of diagnosis for babies following their newborn hearing screen, but NDCS continued to express that 18 weeks was too long for those older children with acquired deafness, who were referred into the system later, to have to wait. The government agreed and the Transforming Services for Children with Hearing Difficulties and their Families in 2008 stated that they shouldn’t have to wait longer than 4 weeks as well.

Quality Standards

Professional societies and organisations have published protocols for the most common audiological procedures for more than 20 years but these were mostly for adult test procedures. It has only been since MCHAS and the introduction of newborn hearing screening that audiologists have had the benefit of protocols for babies and children. NDCS has long campaigned for better audiology services for children and their families and has published Quality Standards for paediatric audiology services since 1994. However, it was only during the last government that a serious interest was taken in producing national standards. Led by advisers at Department of Health level but owned by the professionals we have since seen the introduction of peer-review quality assurance in the newborn hearing screening programme as well as widely used quality rating tools for paediatric audiology services.

Summary

Do I think everything in the garden of children’s audiology is rosy? No. Not yet, we still have a way to go. Services can still be patchy with examples of excellence and dreadfulness! Do I think it’s fair to say that the NHS hasn’t improved during the period of the previous government? No. In the 20+ years I’ve worked in audiology there have been HUGE changes that mean deaf children are seen quicker, diagnosed sooner, have better technology offered and fitted using improved protocols and procedures, a better qualified workforce and where family is seen as a centrally important feature in that deaf child’s outcomes. Am I worried about the NHS Reforms and what this means to children’s audiology going forward? Yes. I am worried that the structural changes risk breaking up integrated services and that services for children with rare conditions (such as deafness) will be poorly recognised or understood by new commissioning bodies leading to poor decisions on commissioning services. The current government must take care to build on the progress made and aspire to create audiology services that can deliver quality to all families, in all areas, all of the time.

Although I’ve concentrated on the policy in England there have been parallel changes in Wales & Scotland too. For links to standards and programmes in the other countries as well as a guide to what parents can expect from their audiology service go to the NDCS website (log-in required – it’s free and takes a couple of minutes).

Christmas is that time of year when we traditionally eat too much, exchange presents, and get extended family and friends together. Whilst I’m not going to attempt any dietary or present buying advice, there may be readers who are going to be joining family or friends with a deaf or hearing impaired child in the family. You may not normally get to spend a lot of time with them or maybe they were very tiny the last time you saw them. The following tips will help make communication easier and more enjoyable for you both…

  • Most children who have hearing difficulty will use all kinds of visual clues to help them make sense of what is being said. They will watch your facial expressions and body language, and they may be watching your lips closely (lip-reading). So it’s really important to make sure you have the child’s attention before starting to talk, keep facing the child and try to maintain good eye contact. Try to get down on the same level as them so that they don’t have to look up to you all the time. And if you’re playing together allow some space so that they can see your face clearly. At Christmas the fairy lights can be very pretty and atmospheric but if a child has a hearing loss they won’t easily be able to follow what’s being said in a dark room so try to keep the lights on when you’re talking. And try not to stand with your back to a window as this creates shadow and makes it difficult to read your facial expressions or lipread.
  • Santa may be a lovely fellow who brings some great presents but with that bushy white beard he’s impossible to lip-read. If you’re sporting facial hair consider a festive trim. And don’t try to talk to the child at the same time as munching your way through the mince pies and Quality Street, or when hiding behind the Christmas edition of the Radio Times.
  • Background noise makes it really hard for a hearing impaired child to follow your speech and conversation in groups can be impossible. Since there’s probably going to be lots of conversation  going on around the dinner table try to make sure that any background noise that can be turned off, such as the looped CD of Christmas songs, is.  Make sure members of the group speak one at a time and visually indicate when a different person is speaking so that the child can keep up.
  • When you’re talking there’s no need to shout. This will distort your lip patterns but more importantly appear to the child that you are angry with them, potentially setting up yet another generation of traditional Christmas family feuding. So speak clearly, naturally and at a normal pace.
  • Mostly though, don’t give up! They may not know all the words you use so try a different word with the same meaning and use gestures to show what you mean. Encourage them to tell you if they don’t  understand.

However you celebrate, I wish you a very enjoyable festive period and happy New Year!

If you’re reading this after Christmas, why not contact the NDCS for a copy of their flyer or poster of tips Communicating with deaf children without references to slightly dysfunctional family dynamics (which may have more to do with the authors own rather than widespread experiences).

 

 

This week is Road Safety Week in the UK and so today’s post is inspired by our Benefits Appeals Advisers who support families with Disability Living Allowance tribunals and who are frequently challenged on what difficulties deaf children have and why they require additional supervision near traffic, especially as the majority are using hearing aids or cochlear implants and therefore have ‘corrected’ deafness.

Clearly, deaf teenagers and adults don’t remain a hazard in traffic and develop terrific coping mechanisms such as taking extra care to visually check for vehicles before crossing roads, and perhaps utilising their peripheral vision more effectively than hearing people. But these skills take time to develop so what do families need to know when their children are young?

Firstly are limitations of the hearing technology and what even the best hearing aids or cochlear implants can’t do. Parents often report that their child appears to be startled as if they didn’t notice a lorry or train approaching and this is probably an effect of the limitations of the microphone pick-up range, coupled with a reduced dynamic range. Microphones pick up sound at an optimal distance of just a few feet. This means that any sounds that have come from further away may have ‘bounced’ off other objects on the way (reverberation). This means that sounds can get distorted and makes it very difficult to judge distance or direction the sound is coming from. Hearing aids are programmed so that they amplify sounds within the wearers ‘dynamic range’ (the quietest sound a person can hear and the loudest sound they are comfortable with). However, because the dynamic range for most deaf people is reduced, the speed at which sounds grow from quiet to loud is quicker. Additionally, microphones are often affected by wind noise outside too obscuring what the wearer needs to listen to, but the programming of the hearing aids should prevent uncomfortably loud sounds getting through to the listener (eg lorries passing). Additionally, hearing aids are limited to the frequency ranges of speech and therefore sounds outside those ranges and heard by hearing people aren’t available (think for example about the restrictions on hearing music which has a much wider frequency range than speech). So what hearing and deaf people are hearing are quite different because of the features of the hearing loss and properties of the hearing aid.

Secondly is the limitations of the hearing nerve pathways – after all hearing isn’t all about the ears. It’s also very much about the brain and the clever things it does with the sound it receives and a hearing aid has almost no effect on this aspect. The brain can focus on what we want to hear and filter out alot of unwanted background noise but has a much harder time doing this when the sound input is not as good as normal. This means that the brain is going to have a harder time when sound has come via a hearing aid, the aid has amplified background noise, and the auditory pathways between the ear and brain are not be as developed as they should be due to the hearing loss and poorer input. The brain is also responsible for ‘localisation’ or working out which direction a sound comes from and this is important in judging speed and direction of traffic. To do this well the brain needs to have consistent and equal sound input from both ears and this would be the goal of programming and persuading deaf children to wear their hearing aids all the time. Filtering and localisation are skills which develop as we get older (young children are very bad at it and it normally naturally develops with age, deaf children may never fully develop them). More important reasons why early identification, good quality hearing aid fitting, and consistent hearing aid use are vital to enable deaf children to develop these skills well.

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.

This is an article that I wrote on behalf of NDCS for the British Association of Teachers of the Deaf (BATOD) magazine. A slightly edited version was published in their September 2009 edition titled ‘The numbers game’. The question “how many deaf children are there in the UK?” is still frequently asked and in times of massive statutory service provision upheaval it seems fitting to revisit what we know (or perhaps don’t!) Perhaps a more accurate question would be to say “How many deaf children would you like there to be?”

It seems that what should be a relatively simple question is creating challenges across the country and for the professions for a variety of reasons; we’re all keen to know whether the now established newborn hearing screening programmes across the UK are working and if deaf children are being identified following the screen. Equally, Health Service commissioners want to know the number of care pathways they should be purchasing for their local population, and Local Authorities need to forecast the number of children in their area that are likely to need additional support from specialist hearing support services. In the current environment of restrictions in funding and changes in fund holders, more and more of us need to make outstanding business cases in order to expand, develop or prevent reduction in our services. A key element of this is knowing our population. It’s no longer good enough to say to purse holders ‘this is the way it’s always been done’. We now have to prove that this is the best way to go. So while those of us working at the coal face will continue, quite rightly, to rationalise resources towards those deaf children with the greatest need, NDCS will continue to lobby for greater resources to be made available from authorities and governments for those with a lesser, but none the less significant, need so that they too can benefit from the support available to other deaf children.

‘No national register of hearing impaired children exists for the UK, and accurate estimates of the prevalence of permanent childhood hearing impairment and of its profile across age and degree of impairment are unavailable.’(2)

NDCS has asked the respective governments how many deaf children there are and although we knew the answer would be ‘we don’t know’, we had to ask.  We can try and estimate the numbers of deaf children from a number of sources, all of which have their limitations:

BATOD survey

The BATOD survey has been an invaluable source of information about the numbers and educational settings of deaf children for a number of years. The survey in 2000 identified 28,184 deaf children known to hearing impaired support services in England. However, the information is dated and it is possible that the numbers of children identified could reflect the level of resourcing in a local authority. In particular it is possible that children with mild and unilateral were not included for example.

School census returns

In England, Wales and Northern Ireland the school census provides some information.  However this again has limitations. First it only includes those children placed at school action plus or with statements where HI is the main type of SEN. Thus many of the estimated 30-40% of deaf children with additional needs will be recorded under a different SEN category and not be included in this HI cohort. Deaf children placed at school action are also not counted. We also suspect from the wide variation in the percentage of children placed at school action plus or with statements that the number of children placed at School Action plus is related to the relative size of specialist services rather than the actual number. The census also excludes pre-school aged children, students attending FE colleges and pupils in private education.

Epidemiological research data

There are a few studies that record prevalence data in different areas/regions. We can then apply this data to estimates of the total population. Although our knowledge of prevalence rates has improved, particularly for babies since universal newborn hearing screening started, the figures for acquired and progressive deafness after this period is poorer. We know that the smaller the total child population the prevalence rates are applied to, the greater is the statistical unreliability of the estimate of deaf children. We also know from research that certain groups within the population are more likely to be deaf and often these groups will live and work in particular regions.(3,4) So, since prevalence rates tend to come from cohort studies in different regions we need to be cautious about applying them across the UK.

Degree of deafness

An additional complicating factor when trying to estimate numbers of deaf children is looking carefully at the definition used in the research. It has been common to talk about ‘significant’ deafness as bilateral and greater than 40 dBHL and most of the research targets these groups. There is now a lot of interest in the research community about permanent mild and unilateral deafness(5) and we’re starting to understand that these hearing losses are significant to a proportion of these children. However, only a couple of studies include these groups.

What the research tells us – for congenitally deaf children (born-with or acquired during/shortly after birth):

There is variation in prevalence depending on region but there seems to be a robust evidence base for the figures for congenitally deaf children with bilateral moderate or worse hearing loss in England. 1.0 per 1000 children are born with permanent bilateral deafness (>40 dBHL) and 0.64 per 1000 are possibly born with a unilateral deafness.(6) Described as “one of the few studies providing reliable evidence of the prevalence of this condition at birth” and “similar to published prevalence rates”. These figures are also quoted in the RCPCH 2004 report(7) where they are described as ‘current best estimates for prevalence’.

Screening protocols are generally designed to pick up babies with moderate of worse deafness. However, although some children with mild deafness do pass the screen level it is clear that some children are also identified this way.

What the research tells us – acquired deafness:

Prevalence data for acquired deafness during childhood is less robust but there are two recent publications of interest. Fortnum et al (2001) reported “Prevalence of confirmed bilateral PCHI (>40 dBHL) increases until the age of 9 years to a level higher than previously estimated. Relative to current yields of universal newborn hearing screening in the UK, which are close to 1/1000 live births, 50-90% more children are diagnosed with PCHI by the age of 9 years.” This study doesn’t look at children older than 9 and we know that acquired hearing loss happens in older children too. But this was the first time such a high acquired prevalence rate was identified. Previous research had suggested that between 11 and 16% were left to be identified following newborn screening. Since this data is for bilateral >40 dBHL deafness, there may be an assumption to make about acquired or progressive mild and unilateral losses too.

The recent Health Technology Appraisal of School Entry Screening (2007) looked at combined prevalence data from 3 cohort groups plus the data from the Trent study (all levels of hearing loss) and determined that the prevalence rate for bilaterals at age of school screen was 2.36-3.03/1000 (ave 2.69) and unilaterals 0.83-1.24/1000 (ave 1.04) giving a total of 3.73 per thousand children entering school with any degree of permanent deafness.

Number of deaf children

Given the range of prevalence data across studies and regions and the type of deafness being recorded a degree a caution is required when deriving estimates of the number of deaf children. This is illustrated in the recent Department of Health publication Transforming Services for Children with Hearing Difficulty and their Families: A Good Practice Guide (2008). This report states that for England  “At any one time, there are about 16,000-20,000 children aged 18 or under who have bilateral moderate, severe or profound hearing impairment, a high proportion of whom routinely use hearing aids, cochlear implants and other implantable devices to hear sounds”. The UK child population is about 20% above the figure for England. If we increased the Good Practice Guide’s estimate of deaf children by 20% then we could say that in the UK there are between 19,200-24,000 deaf children in this category. However, there is no methodology included to show what these figures are based on. The estimate of the number of deaf children depends on the prevalence rate selected and the age range that prevalence rate is applied. For example, for acquired deafness for those aged 0-9 years do we apply 0.5/1000 or 0.9/1000 and where in the 0-9 years do we start applying it?

NDCS Alternative Estimate

In summary, NDCS have used the 2006 mid year population estimates for the UK, applied stepped prevalence data for different age groups based on the research highlighted above and calculated a low and high prevalence range. At birth the prevalence used for combined bilateral and unilateral data is 2.1 per 1000. The minimum prevalence used for combined bilateral and unilateral data is 3.1 per 1000 and the maximum 3.9 per 1000 at age 18.

The research on acquired unilateral and mild deafness is less secure but using a similar strategy we get a range of between 18,800 – 22,400 children age 0-18 years.

Taken together we estimate that there are between 41,000 – 48,000 children in the UK aged 0-18 years with a permanent unilateral or bilateral, mild, moderate, severe or profound hearing loss.

Conclusion

So, this article actually raises more questions that it answers. As they say, you can prove anything with statistics! But are we right? Does it matter? And how might we go about finding out the real number of deaf children in this country?

References:

1. In this article the author uses the term ‘deaf’ and ‘deafness’ to mean all types and levels of permanent hearing loss.

2. Prevalence of permanent childhood hearing impairment in the United Kingdom and implications for universal neonatal hearing screening: questionnaire based ascertainment study; Heather M Fortnum, Quentin Summerfield, David H Marshall, Adrian C Davis, John M Bamford, BMJ 2001; 323:536

3. Fortnum, H. and Davis, A. Epidemiology of permanent childhood hearing impairment in Trent Region, 1985-1993, British Journal of Audiology, 1997, 31, 409-446

4. Bradford study (prevalence rate was 4.69/1000 compared with non-Asian children of 1.38/1000 births), Dr Gill Parry, published in the BACDA Newsletter October 1996, p25-29

5. Unilateral hearing loss in infants, editorial, British Journal of Audiology, 2007

6. Report of the Evaluation of the first phase of implementation of the NHSP, Revised 2005

7. Children’s Audiology Services – A Multidisciplinary Review in Partnership with the NHSU, Hall, 2004

8. Current practice, accuracy, effectiveness and cost-effectiveness of the school entry hearing screen, Health Technology Assessment 2007; Vol. 11: No. 32

9. Transforming Services for Children with Hearing Difficulty and their Families: A Good Practice Guide, DH, 2008


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