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Anyone who knows about Auditory Processing Disorder - I'd appreciate some help!

(17 Posts)
OverflowingMum Thu 28-Jul-11 20:42:32

Hoping some may be able to help me! I will try to be brief!!hmm

DD3 aged 7. She was diagnosed with Aspergers in Feb 2010. She has struggled enormously with aquiring literacy skills at school since she was in reception. Psychology testing (WPSI ) and assessment by Learning Support Teacher show her to be of above average intelligence yet she continues to perorm WELL below average , especially in reading and writing. People (LSA, Ed Psych) have used phrases such as "dyslexic tendancies" and "difficulties in keeping with dyslexia" but wont commit to saying "she has dyslexia" I am in the process of applying (again!) for an assessment for a statement for her (but that's another thread!wink)

We have ALWAYS felt that she doesnt quite hear things the same as other people. One of the first things we did when we began to expeience concerns about her development was have her hearing checked (3 times!!) but this always came back as normal.She constantly "mis-hears" similar sounding words. She muddles up syllables. and she CANT do phonics AT ALL ( tried to pursuade school to teach her using key word approach, they refused and stuck her in yet more booster phonics groups!)It took her ages to understand which words "rhymed." She has trouble identifying where a sound comes from at times (eg if I call her when we are out, it is often clear she has heard me but she often spins round and round trying to see where I am calling from)

She also has SHOCKING organisational skills, and is hopeless at any tasks involving sequencing (takes her forever to get ready for school in the morning etc)

A couple of times now people (one of which wa sthe Autism Outreach Team) have mentioned phrases like "poor auditory processing" and "poor auditory discrimination" She has seen SALT twice who both times basically said everything was "within normal limits"

I have an appointment booked next week for private dyslexia assessment for her. The lady doing this talked a bit about APD when I spoke to her and suggested I contact someone locally that is quite well known in the field.I have done this and she has left me a message ( I havent managed to actually speak to her yet!)saying there is a clinic which offers assessment locally , but it is a private clinic and costs £200. We dont have much (any!) spare cash just now, and are already paying out for dyslexia screening. We could potentially save up some money over a few months and go ahead with assessment.

But I guess my question is would it be worth it? Is it possible to have APD and Aspegers? Or are her processing issues just part of her Aspergers so we wouldnt learn anything new from assessment? If we do find she has APD would that alter management for her and eg teaching approaches etc.How easy would it be to get LEA to consider this in a statement?Is there any specific therapy that would help?
sorry for rambling, but would appreciate any advice! we are obviously keen to do whatever we can tp help DD , but do have to be realistic about money etc...hmm

LeninGrad Thu 28-Jul-11 20:48:37

Message withdrawn at poster's request.

OverflowingMum Thu 28-Jul-11 20:53:44

hope you get somewhere leningrad with your apps.It is frustrating isn't it!

I have been told that I could possibly get her referred to Great Ormund Street as they will assess on NHS and are apparently only place in country currently offering this, but that is MILES away from us, and I'm guessing will have huge waiting list too....( not to mention that it would be less than easy I suspect to try and convince my GP to do this...)hmm

MynameisnotEarl Thu 28-Jul-11 21:19:56

I don't know if this will help, but my ex has Aspergers & APD.

He constantly asks people to repeat what they have said to him but his hearing is perfect. He describes it as having to interpret what he hears into somehting he can understand - then he has to formulate his response and think hard about how he is going to say it. All this takes seconds, but there is enough of a delay to cause confusion.

For example, it is automatic, when someone says 'pardon?' or 'what?' to re-word a question. This, to someone with APD is a new question and has to be considered separately.

This caused so much confusion between us in the past with the constant misunderstanding and having to repeat myself leading to me being convinced he had a hearing problem.

The only successful way to communicate verbally was to get his full attention (using his name, speaking face-to-face), speaking clearly and if asked to repeat, using exact same words.

oddgirl Fri 29-Jul-11 08:28:29

Hiya
I have a 6 year old DS with dyspraxia (verbal and motor), ASD and some auditory processing difficulties. We recently went to an audiologist who gave me some excellent advice for auditory processing difficulties. She also said that there have been studies to prove that children on the spectrum hear in a simialr way to NT typical children up to about 40 decibels but above that ASD/AS children respond to sound very differently. Auditory discrimination is almost impossible for them in the noisy classroom.
For the school she suggested:
*sit at the front so child can see teachers face (may lip read to aid comprehension)
*frequent listening breaks in a quiet area
*Use of a soundfield FM system
*buddy child up with a listening partner
*check comprehension not by asking child to recount what needs to be done
*rephrase rather than repeat
*visual cues
*pre lesson learning so child is familiar with new and relevant vocab

At home
*listen to audio CD stories and get child to recount the story-gradually introduce white noise to "compete" with CD and check comprehension then work up to classical music, adult voices (Radio4 type stuff) then finally childrens voices
*practice following increasingly complex instructions
*Simon Says-ask child to imagine doing the action in their minds eye before they actually do the action (develops the higher centres)
*playing an instrument and getting child to pick out loud and soft, high and low notes
*pick a key word (eg pizza) then talk and drop it into the sentences every now and then-child claps when he hears that word
*play lots of " I went to the shops and bought..." adding a new item every time.

HTH

nickminiink Fri 29-Jul-11 13:28:08

OverflowingMum - We are currently awaiting referal to Great Ormond Street for our son who is 10 to be assessed for APD, it has took us approx 4 months to get the referal agreed by our local Paedatrician, who said to me at the beginning that out of county referals was not possible unless you lived in London. We live in leicestershire,I perservered and made a nuisance of myself until finally I got them to agree. I think the real reason is down to funding as out of county referals affects budgets etc. So firstly we had to get a "normal" hearing test which you have to pass, then a report from his SALT, then a report from the EP and finally from the paedatrician for the referal. Becuase of the holiday season this has put things on hold but we are told we will get the referal not sure of the waiting time once the referal has been made not got that far yet. So if you are going down the NHS route keep perservering and make a nuisance of yourself it worked for us. Its defeintely worth it as at least with us we can stop asking the question could he have APD, this way the question will be asked and then if he has we can focus on the right strategies to help. Regarding statements not sure as we are currently awaiting S.A which has been agreed, it can't do any harm as the strategies and provisions will have to work around APD if he has it, in other words they can't ignore it.
Good Luck

dolfrog Fri 29-Jul-11 14:10:22

OverflowingMum

Auditory Processing Disorder (APD) is a listening disability, or not being able to process all that you hear.
According to the Medical Research Council (MRC) 10% of children have some degree of APD including those who have had Otitis Media with Effusion (Glue Ear).
APD has a genetic origin as can be acquired via severe ear infections such as Glue Ear. APD has only been recognised in the USA in the last 30 years and only since 2004 in the UK, we are playing catch up. The MRC have been research new universal sound frequency based APD diagnostic tests to replace the old language based tests fro m the USA. these test has recently finished their clinical trials in many UK regional APD assessment centres and a centre in Greece. The next step is to have these new diagnostic tests to have global recognition as the diagnostic tests for a universally recognised disability, which will hopefully happen in the next 18 months or so.

APD is one of the underlying cognitive issues which can cause the dyslexic symptom, and can also be one of the cognitive issues which can be a contributory factors which can trigger some of the criteria behaviours of ASD.

APD can mimic other already established conditions so some who only have APD can be miss diagnosed as having ADHD, and or Aspergers Syndrome. Dyslexia has three cognitive subtypes, Auditory, visual and attentional, Those who have APD are part of the auditory cognitive subgroup, and have APD as the cause of our dyslexic symptom.

Those who have APD have problems processing the gaps between sounds, which includes the gaps between sound that can make up a word, or even the gaps between words in rapid speech. So those who have APD tend top learn to speak and new words only by being able to say or reproduce the whole sound of a word. Reading, writing and spelling is about learning to decode and recode the visual notation of speech, or the graphic symbols society chooses to represent the sounds of speech. We use an alphabet writing system, the Latin Alphabet writing system, which has multiple symbols to represent the sound s which can make up a word. and phonics is about being able to identify and use or manipulate the symbols to reproduce the sound of speech. (Especially Sub vocalising) and is dependent on having good listeing skills or abilities. But for those who have APD , like me and my family, phonics can only be an abstract concept we can understand but can never use. We can not process the gaps between the sounds the letters are supposed to represent, and so called phonic blending is a cognitive impossiblity for us. Unfortunately many teachers are have had a very poor quality of training and have not idea of how children learn or about their various different learning needs, and the government only wants a one size fits all teaching program is it is the cheapest option.

there is more information on the Auditory Processing Disorder in the UK (APDUK) web site
including
What is Auditory Processing Disorder
Ideas For APD IEPs
Management of Auditory Processing Disorders all three can be downloaded as a pdf from here
The Power of Visual Thinking
How visual learners may prefer to learn to read
and the APDUK Newsletters with contributions for m both those who have APD (all ages) and from professionals interested in APD, and some online research projects.

I hope this helps, you can PM me if you have any questions.

OverflowingMum Sat 30-Jul-11 16:47:40

thanks for the replies.
The more I read about it the more so much of it would seem to fit for dd3.
Now need to consider whether we try and find £200, or start the battle to get NHS referral. I am feeling VERY worn down by everything at the moment though. AM still in the middle of battle for SA (ongoing since last DEC) DD3 is in her especially challenging "adjusting to th holidays" mode, and I also have 5 other dc and an almost full time job....I'm exhausted LOL sigh.... I will do what I have to for dd3 but just not sure I have the strength to take on another lengthy battle just now...hmm
(off to look for things to ebay to raise £200 LOL!)

dolfrog Sat 30-Jul-11 17:06:33

OverflowingMum

You require a GP referral to Great Ormond Street Hospital, (NHS) you may need to download a copy of the Medical Research Councils (MRC) APD pamphlet (pamphlet with a picture of a young girl on cover top right) The MRC define all conditions in the UK so your GP can dispute that APD exists, but your GP may have to do some research to begin to understand what APD is.
An NHS appointment usually takes about 12 weeks from the date of your GP referral, You will also need the results of a recent hearing test, so that they can be calibrated into the APD diagnostic tests.
If you go privately you may not get the recommended multi-discipline Assessment, only a diagnosis of APD. or a multi - discipline (multi professional) assessment may cost a great deal more than just a APD diagnosis. Really depends on whether you want a diagnosis or a full identification and explanation of the support needs.

OverflowingMum Sat 30-Jul-11 21:14:58

dolfrog - we have had several hearing tests - last one about 18 months ago at local hospital, but I dont have a copy of results - although know it was normal but Gp no doubt will have.
We also have diagnosis report form multidisciplinary assessment in Feb 2010 with diagnosis of Aspergers. Have Ed pysch report too (though not much use really with no new info in) is there anything else we would need?
The private clinic locally is by a leading expert in APD (articles on website from her) but havent yet spoken to her to see what exactly is involved in assessment.
Other consideration is GOS is a LONG way from us. Travell alone would cost a lot, and logistically it would be nightmare with 5 other dc to take into account as well, and dh is a teacher so unles app happened to be in holiday time he couldnt get time off....
will go consider some more....thanks grin

dolfrog Sun 31-Jul-11 03:59:52

OverflowingMum

Not too sure of the make up of the multi - discipline assessment teams you mentioned as the the make up of these multi - discipline assessment teams does depend on the issue or issues being investigated.
For an APD assessment and diagnosis the team is lead by a Consultant Audiologist who carries out the APD diagnostic tests, and the Support professionals are the Speech and Language Pathologist, and Psychologist who make assessments regarding how APD affects speech and language development, and the problems of living with APD.
Hearing tests are not part of an APD assessment but need to be included so that any hearing impairment issues can be eliminated.

I do know about the logistical problems, when our sons an I were first diagnosed we had to go to Sheffield University, which ran the first and only UK APD clinic at the time, and we had to get there from just North of London, but it was worth it.

OverflowingMum Sun 31-Jul-11 17:14:31

dolfog just replied to your PM and then read your message and see that you came to Sheff for diagnosis! (we are in Sheff) It was Dilys Treharne at Sheff University I contacted and she is now running the private clinic but as I understood from her phone message only clinic now available on NHS is Great Ormund Street. Sounds as if though that the assessment inSheffield would be thorough and worth doing....off to do more budgeting!!wink

davidsotherhalf Tue 02-Aug-11 09:15:48

the research on testing for apd was done at Nottingham University Hospital they are supposed to be the leaders in dx, my dd was dx with apd about 7yrs ago and and took part in the research programme for the tests to dx apd, hth

dolfrog Tue 02-Aug-11 15:50:25

davidsotherhalf

The Medical Research Council (MRC) now lead APD research in the UK. APD research is carried out for the MRC by the Institute of Hearing Research, which is currently based at Nottingham University.
The leading APD clinical researchers are at Great Ormond Street Hospital, and National Hospital for Neurology and Neurosurgery. And to gether with other UK APD professionals make up the UK APD Steering Group Many local or regional centres participated in the clinical trails of the new APD diagnostic tests, but not all of them yet feel able to continue assessing and diagnosing APD (I wish they would)
Before the government funded the MRC to research APD in 2004, the only APD clinic was at Sheffield University and was funded by the NHS, and was investigating more the Speech and Language aspects of APD.

So the MRCs IHR are leading APD research in the UK, and they have three University centres, including the base at Nottingham University, the clinical research is base at the two London Hospitals, and the Speech and Language lead comes from Sheffield University. They have all been working together in their various areas of specialisation, as have many others. And the UK APD Steering Group meets every three months to discuss the progress being made and how best to progress.

the next step is to have the new MRC battery of APD diagnostic tests accepted as part of the Universal Gold Standard of APD definition and diagnosis, which could happen in the next 18 months or so. Which is quite good progress from 7 years research.

mcmama Sat 06-Aug-11 10:32:08

Overflowingmum

Hi Overflowingmum, is the APD test you're talking about the same as what would be done at Great Ormond Street? Do you have any more details about the test/cost? This is something we have been considering for my son and Sheffield is alot closer to where we live. Does anyone know if this diagnosis would be 'official' as from what I've previously read, Great Ormond Street was the only place you could get a diagnosis.

Thanks

dolfrog Sat 06-Aug-11 20:40:29

mcmama

Dilys Treharne ran the first APD clinic at Sheff University funded by the NHS, before the Medical Research Council began their APD research program in 2004.
Dilys is part of the UK APD Steering Group which helped co-ordinate the UK APD research program, and as a part of which Great Ormond Street Hospital focused on childrens APD issues and National Hospital for Neurology and Neurosurgery focuses on adult APD issues, and these hospitals are literally next door to one another.

mcmama Sat 06-Aug-11 20:59:18

Thanks Dolfrog

Is this APD clinic still running? Do you know if she does definitely do private testing?

mcmama

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