Auditory Processing Disordder (APD) help, experience with, advice please!

[littletree]

DS finally had assessment with Ed. Psyche last week. (Long story short- school though he was Autistic). Finally finally we have a diagnosis for him and it is a relief but feel I am at beginning of journey for getting him the right help now and find that there doesn't seem to be a lot of info out there regarding his disorder.

His is not asd. he was diagnosed with Auditory Processing Disorder which absolutely makes sense and fits his behaviour. I had never heard of it before last week. Also diagnosed with ADD and probable dyspraxia, although we need to see the Occupational therapist to have this confirmed. EP did an iq test as well and he came out with iq of 138 with blended score and 145 for verbal comprehension. She said he is highly intelligent but progress is being hindered because of his disorder.

Feel extremely emotional everytime I think about how misunderstood he has been in school. So bright, sweet and lovable but so utterly lost at school. Does he need to be statemented? How do I ensure he gets the help he needs at school? Anyone know of any effective learning techniques, schools, etc. Any help would be greatly appreciated. He goes to local medium sized village school with around 26 in his class. Entering year 4.

Thank you.

My son has APD and we had him assessed using the SCAN-3 test for auditory processing by hemispheres movement for learning. We then treated him using the Listening Programme with very good results he went from the disordered range to the average, and this brought about an improvement in his spelling and motivation for reading. The therapist at Hemispheres are all OT so they will be able to help with the dyspraxia as well.
Hope this helps.

First question is who made the APD diagnosis, you only mentioned an Ed. Psyche and that profession are not able to provide a clinical diagnose of APD.
Auditory Processing Disorder (APD) is a listening disability, about not being able to process all that you hear. APD has a genetic origin
you may find more information about APD at the Auditory Processing Disorder in the UK (APDUK) web site, and the 7 downloadable APDUK Newsletters
More information about Managing APD in an educational setting

We were where you are now back in 1998, but things have improved since then, the Medical Research Council began to research APD in 2004, and there is now a greater awareness in the UK than back in 1998. But there is still a long way to go until there is a real understanding of what living with APD can be like.

thank you Mum40. How old is your son now? Haven't been given advice yet for how to get help/support. We haven't received the full report yet (said this will take another 6 weeks from now to get back) . What is the Listening Programme?

Dolfrog-
Yes, it was the Ed Psyche that made the diagnosis.
I have looked at the APDUK website and found some useful links but find the website itself a bit convoluted and badly organised? Is it just me? If not the Ed Psyche making diagnosis, than who?

Mum40

APD is diagnosed using a battery of assessment tests, so i would check the validity of just using a single SCAN test. These tests have been bought byu program providers, who are not able to provide a UK clinical diangosis.

The Listening Program does not help all who have APD, for some it can be harmful, You seem to be implying that the Listening Program is a cure for APD, which is not the case. There is no cure for APD, and even the Listening Program's developer will tell you that the program does not cure APD.

So you should seek a full clinical assessment as per the Medical Research Council guidelines.

littletree
APD needs to be diagnosed by a multi discipline (multi professional) team. An audiologist to carry out the battery of APD diagnostic tests, to diagnose the various subtypes of APD, a speech and language pathologist to assess how the diagnosed APD affects speech and language issues, and a psychologist to assess the problems of living with APD. this can take three of four appointments.

Currently only Great Ormond Street Hospital has the facilities to provide the required assessment, although there is hoped to be more assessment centres in the near future. (Training these different professionals takes time)

The APDUK web site has been designed to be APD friendly, by me and other adults who have APD. The multi-coloured text is a coping strategy, and we also demonstrate amny of the using text strategies.
So how is the web site badly organised, we are always trying to improve it. Those who have APD find it easy to navigate.

Mum40

Thank you. I am perplexed as to how a respected Ed Psych who came highly recommended could give a diagnosis? It doesn't make sense and now I am feeling paranoid and confused and worried that I am now going to have to go on another long journey to get a conclusive diagnosis.. It doesn't add up. She was quite confident when we had our chat after the assessment. again, I don't have the full report so perhaps there will be further recommendations in there for referral, etc.

With regards to the website, I suppose it is because it looks a bit old fashioned and I found it difficult to navigate lacking footprints and interlinking so that I knew where I was within the site. Also, the colour coding to the lay person's eye is difficult to focus on. You can tell that I am new to the disorder as I hadn't immediately keyed into the purpose of the multi-colouring.

littletree

What you have is what we had back in 1998,a "Summary Diagnosis" which is waht a professional who can recognise the existence of the probable disability, but who is not qualified to provide a clinical diagnosis. We had to wait until 2003 / 2004 for that for our DS1, since then both DS2 and DS3 had a clinical diagnosis of APD, and each as different degrees of APD, and different alternative cognitive abilities to work around their problems. As i mentioned I also have a diagnosis of APD and just recently so has my DW. So we are a family of 5 APDs.

The Ed Psych should have recommended that you seek a GP referral for a clinical diagnosis.
If you have problems with the multi-colour design then we have the information sheet section the sections of the web site are in the left hand menu (yellow text) and the web pages in each section are the white text top of each web page. If you really want to see how an APD thinks then have a look at my own web site [[http://dolfrog4life.homestead.com/AA_index_ZZ.html Living with an
Invisible Disability]] which includes the best example of how i would like a links web page to be set out (more about the design and layout rather than the actual content).

The APDUK web site will be updated in the near future when the new regional APD diangostic centres are rolled out

If he has an auditory problem you should investigate Auditory Integration Training.

My 2 have been totally transformed by it. They didn't have a dx of ADP - and I don't want to imply they did.

But they both had auditory problems that were cured by Auditory Integration Training.

There are also other listening therapies. But I only have personal experience of AIT.

My DT2 was seen by an OT earlier this year and she described him as having sensory and auditory processing issues after doing various tests which included the SCAN Test. She was alerted to doing the SCAN test because of her findings in other tests and obviously from what we told her. She did not diagnose him with APD, she sees her role as treating the symptoms rather than diagnosing. Dt2 has been doing the listening program also as well as sensory related exercises and listening activities. I dont believe an EP can diagnose APD, as to get a formal clinical diagnosis you would have to be seen by an audiologist. I think the only thing an EP could deduce in relation to processing is the result of the part of the score related to verbal processing. I recall DT 's EP mentioning processing when speaking about his scores but no diagnosis . I would be really scepticial about that. The listening program involves listening to specific pieces of music twice a day. Its meant to train the ear to process more effectively. We have seen some positive results and are due to be retested again shortly

Here are some audiograms I have posted from my daughter.

They show what her hearing was like pre treatment, and how much it improved post treatment.

Pre treatment she had a range of -10 - 10. Afterwards 0 - 5. Which is a huge improvement.

There are various programs being marketed in the UK, which some claim to be cure for APD. some of the programs can help some through a delay in development, which has been described above. Children stop growing out of developmental delays from about 7 -8 years of age, which is when medical professionals will begin to assess and diagnose a clinical disability such as APD. Some, not many, can still have developmental delays which are not resolves until their teen years. Some can also have retained reflexes to certain stimuli and therapies for this can provide a great improvement in the related abilities.
The real test for any of these programs is any long term or life long improvements for those who may have APD, so far over 20 years or more none of these programs have been able to demonstrate this.

APD has a genetic origin, and if children who have family history of APD may be considered for a diagnosis or assessment before the age of 7 years old, there are also children who have had Otitis Media with Effusion (Glue Ear) who acquire APD during their early development.
The Scan tests were developed in the USA in the 1990s, and were then only part of the battery of APD diagnostic tests, they were the initial screen test to inverstigate whether APD was a possibility, prior to the full battery of APD diagnostic tests being applied.

Auditory Processing Disorder is a listening disability, about not being able to process all that you hear. All environmental sounds, which includes alarms sirens sounds of nature and speech. Those who have APD have problems following conversations, following multiple verbal instructions, and are not able to phonetically sound out new textual words, so they can not use phonics. The technical explaination for this would fill may of these types of posts.
However you could have a look at the CiteULike research sharing Group: Audiology and Auditory Processing Disorder - library 389 articles
or the American Speech-Language-Hearing Association (ASHA) web site for more detailed information

Wow. Thank you everyone for your input. It is all so confusing and like speaking a different language. I just don't understand it all yet and am not sure now whether ED was making a definitive diagnosis or as you say Dolfrog, offering a summary diagnosis. I am going to investigate all of your references and then jump back on the board 'with more questions undoubtably. Yes, ds scored in the bottom .5% for verbal processing, I believe. I am going to ring her tomorrow to clarify.

Seems like never ending series of stuff with poor DS. He also has lazy eye/squint and can't see 3d. What a lovely little stew pot he is! He really is such a sweet, interesting, interested, creative and lovable little chap. Just want to make sure we do right by him and get him all the necessary support. BTW (prob can of worms here), but, can a state school accomodate or should I bankrupt myself and find a good private school equipped with a good sen specialist? :-)

State school is more likely to be able to accommodate him. Very few private schools are good with SN (although some are). Statements only really apply to state schools...

Have you had his eyesight tested by a behaviour optometrist? They may tell you different stuff than you have heard before.....

BTW DS used to have no 3d vision, but that has more or less been cured now :)

OMG! Behaviour optometrist?!? Is there no end to specialist practionists I have never heard of????

DS cured of 3d thingy? How? Just grew out of it?

He didn't grow out of it.

As well as doing AIT at the Sound Learning Centre we also did Lightwave Stimulation with them.

DS really hated it. And kept his eyes closed for most of it. But afterwards he said "Wow, I can now tell if the figures (in his warhammer game) are in front of or behind the gate".

He says he now has 3d vision and he didn't before. Unfortunately he still has loads of other visual perception problems though.....

But he's no long under any eyesight specialists... So I haven't had his 3d vision tested.

He was 9 when he did this treatment (last year)

wow wow wow IndigoBell. Thank you for the link to The Sound Learning Centre! That all makes such sense. They have an open day in September that I'm going to go along to. Your ds sounds so much like mine.

And, one of the behavioural optomotrists happens to be at our local county hospital where we've been going for orthoptics for the past 4 years! No one ever mentioned this to me before.

Hi Littletree, like you we have APD linked to our 10 yr old son by the EP & SLT but no offical DX as like Dolfrog has advised APD needs to be diagnosed by a multi discipline (multi professional) team. We are now awaiting a referal to Great Ormond Street, which takes forever, we started in February and have only just be advised we could get a referal after weeks and alot of hours spent setting up appointments for the tests and reports needed for the referal, then I guess there will be a long waiting list for an appointment. Unfortunately nothing is quick when you have a child with SN, just be prepared to keep fighting for your child. When we started in February we were told my son would not get an out of county referal (we are in leicester) to GOSH (I am guessing because of funding) but a very determined Dad (me) never gave up and we got one. I hope your path is not filled with as many obstacles we had to face.
Good Luck

nickminiink,

Thank you for sharing your story. That helps me a lot. I get very cross and angry (probably like most people on this board) when I think that I must prepare for battle. Who knows? We might start the school year and the school will be open minded and willing to help. Right? But I already feel my defenses up. It is the main thing on my mind right now so I keep spouting off about it and I really must stop. DS went for a play date yesterday with a boy in his class and I started going on about it to his mum who has a nice mainstream son who has no probs at school. She was polite and sympathetic but probably thought I was a bit of a lunatic over managing mother!!! Asked if he is getting good results then whats the prob. He IS getting good results (as in in the top group for classwork) this is actually below what he should be doing. Some think to leave well enough alone but the fact is he is achieving these results whilst only being semi-present in the classroom and getting low marks for efforts (eg. 3A level but C for effort)

BTW, he is very good at music. Is this something APDs are known to be good at? Or would that be difficult? Ie, he plays pieces by memory?

Littletree,
No problem oh yes be prepared to battle for everything, that's what I found as its easy for the school to say your son is doing ok and will eventually progress, I kept believing that for 5 years then realised it wasn't going to happen under his current provision, just wished I fought sooner. Anyway your child seems totally different to my son as he is already getting good results, where as my son is bottom of the class, except for maths that must be his thing I guess. I find it no point speaking to other parents with NT children as they don't understand so I don't bother. I don't know too much about APD in terms of what is acheivable, all I know is my son has poor auditory memory and processing and he easily forgets simple instructions and finds it difficult to repeat back instructions if asked. He has trouble finding the right words to spark up a conversation let alone join in and keep a conversation going. I wouldn't like to say but if he plays music by memory all I can say my son couldn't do that. To be honest the frustrating thing for us is we haven't been told my son has APD only he may have APD, becuase as mentioned a DX has to come from multi discipline (multi professional) team and at present GOSH is that team, so we have to go through the whole process to find out, therefore after months of pursuing this it may materialise he doesn't have it, but at least we know.
Good Luck

I wish you luck getting that diagnosis Nick. How do you go about getting a referral to GOSH? Is it through the GP? EP?

Yes, ds is doing 'well' in results, the school hitting above average targets. However, it is soul destroying reading his reports with all of the 'must try harder' 'we expect more from you' etc. However, his iq scores rank him in the top 99.8% according to the EP therefore he should be achieving more but his APD (working diagnosis) and ADD are bigtime prohibiting him. Everyone keeps getting cross with him for spacing out in class and literally staring blankly at a piece of paper for a half an hour in the classroom because he doesn't understand how to proceed and can't order himself. He's not being naughty, he doesn't blinking understand what to do despite being an incredible thinker.

Dolfrog-
I read your website and have found your links HUGELY helpful. Particularly one of the links on visual spatial thinkers. Thank you.

littletree

you will require a GP referral to GOSH, you may find a copy of the MRC 2004 APD pamphlet useful. It can be downloaded from either the MRC web site or the APDUK web site where it can also be read online (click on the wolf)
For more articles by Lesley Sword have a look at Gifted and Creative Services Australia or her mentor Linda Silverman and her team Visual-Spatial Resource we have a permission to reproduce some of these articles in the Learning Styles Section of the APDUK web site (Guide)

Our GP didn't know what APD was let alone helped us with a referal he fed us back to the paediatrician, who is very helpful and bent over backwards to get an out of county referal for us, obviously after the EP report, standard hearing test etc.
Good luck with your doctor.