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Here some suggested organisations that offer expert advice on SN.

AIT or TLP or LP??

(16 Posts)
yuckythingsonthefloor Wed 27-Jul-11 22:32:49

Would any of these be appropriate for my DS? He is AS and 7, but his speech fortunately is very good, it's more the social use of language that is a problem. But his attention, ability to follow instructions and listen is a weak point, as is balance and coordination, not to mention his behaviour from time to time.

Would any of these therapies help? I've read various threads on here and often they mention an improvement in speech but this isn't quite what I am after. Would these things be a waste of time?

I feel that he is constantly being shouted at for not listening when he simply can't help it and he is getting the impression that he is naughty. :-(

I am quite persuaded to give it a try but don't know if I am barking up the wrong tree.

yuckythingsonthefloor Wed 27-Jul-11 22:33:40

Also, does any one know where I could find a practitioner of TLP in or around West London?

dolfrog Thu 28-Jul-11 02:58:16

yuckythingsonthefloor

I have a research paper collection Computer-based auditory training (CBAT) (which is also listed on my Communication and Neurology web page.)
This collection includes Use of auditory learning to manage listening problems in children from the Medical Research Council, and 16 other related research papers.

"ability to follow instructions and listen is a weak point" tends to be a part of Auditory Processing Disorder (APD) a listening disability, which can be an underlying contributory factor for AS.

IndigoBell Thu 28-Jul-11 09:35:23

Do AIT. It only takes 10 days, whereas the other therapies all take longer.

I have had absolutely amazing results with it - twice. For 2 children with very different problems - and neither of them had speech problems.

It doesn't just help with speech. It helps with everything.

I went to the sound learning centre which is in North London.

And I believe this place in reading is cheaper.......

Then after you've done it, you need to do a retained reflexes therapy......

yuckythingsonthefloor Thu 28-Jul-11 22:10:24

Thanks both of you and Indigo, does the place in Reading do exactly the same thing as the Sound Learning Centre? I have heard of the latter through a mother of a little boy in my son's class who said (again) that it helped his speech, but he seems to have some significant other sensitivities.

My DS used to be extremely sound sensitive but has grown out of it largely and now isn't that bothered by hoovers, thunder or even Guy Fawkes night. He feels reassured to have ear defenders but doesn't really need now.

And what does retained reflexes therapy do?

Dolfrog will have a look at your research papers now.

yuckythingsonthefloor Thu 28-Jul-11 22:44:17

Dolfrog - having looked through most of your collection the papers seem to refer mostly to FastForward which I thought was more for children with reading difficulties. Is that the case? Also, it's difficult to know which way to go on any of it, as the research is often inconclusive, or says there is some positive result but it depends on the form of the training as per the individual differences. Hmm. Maybe I need to read it some more.

Have your DC done FastForward?

dolfrog Thu 28-Jul-11 22:53:15

yuckythingsonthefloor

a retained reflex is a developmental delay have a look at RETAINED PRIMITIVE REFLEXES & LEARNING DIFFICULTIES not a research paper but quite a good summary as most research papers tend to focus on single reflex issues.
And the therapy is about trying to trigger those reflexes from being retained into becoming functional. So some of the programs mentioned above may be able to trigger an developmental delay in an auditory reflex.
And a development delay is different from a disability, and unfortunately you need to be able a identify the difference between a developmental delay and a disability, which is not always clinically possible.

And many so called therapies which can be expensive may not have the expected or predicted result, which is the harm element, if all expect a therapy to be a cure, especially the child who puts in a great deal of effort for no gain.

for many retained reflexes therapy can kick start developmental delays, which can lead to rapid strides in development, but it many cases an underlying disability may still remain.

dolfrog Thu 28-Jul-11 23:24:46

yuckythingsonthefloor

FastForWord (FFW) during the 1990s, when i first started to research APD to help my eldest son, was being marketed as the cure for APD, and FFW is not cheap at a basic £2,500 sign on fee. The initial research data from the program developers failed to include some of the less favourable results. There was also quite a storm regarding professionals ethics, young audiologists diagnosing APD and while at the same time being remedial program providers, it was diagnosis to a remedial program, or a licence to print money. There was a conference in 2000, whihc redefined what was CAPD to the wider definition of APD.
There were many legal battles especially as the income from FFW went to improve the university facilities of programs developers, who used their universities legal department to good effect. Eventually research has been done which provides a more realistic picture about what FFW can do. Which are many of the papers in that collection.

No I have not used the program, but one of the families involved in the setting up APDUK, many years ago now, paid out for FFW only for their child to gain no benefit at all. Which is what can happen with any of these programs. APD research has identified that APD exists, and even identified various subtypes of APD, but they have not yet identified the cause or causes of APD, and until they do there is no way any program can explain how it treats APD, or which subtypes of APD. Or more importantly identify if a program can or can not help any child or adult who has APD.

FFW is still being marketed, but more by licensed agents.
And all of these programs at sometime or other have asked APDUK to endorse their program, to help their sales. APDUK does not endorse any programs as this could question our ability to provide unbiased information relating to APD, And if APDUK were to endorse a program it would first have had to have gained Medical Research Council approval.

IndigoBell Fri 29-Jul-11 14:06:34

Yucky - I don't know if the reading place is exactly the same as the SLC or not. All I know is that my 2 have been to SLC and both had massive success with it.

If you son has hypersensitive hearing (which it sounds like he does if he finds loud noises upsetting and uses ear defenders) then he def needs AIT.

I've put up DDs audiogram's here

Look at the left ear pre treatment and post treatment. Pre treatment she had significant hypersensitive hearing (area above 0) - after treatment her hypersensitive hearing has been cured - she has no area above 0.

Perfect hearing would be a flat line at 0. You can see both ears are much, much closer to that post treatment than they were before.

Hypersensitive hearing is painful - like running fingers down a black board.

Curing their hearing problems has resulted in diff benefits to both of them. For DD it meant she could finally learn to read, whereas for DS it meant he could stay in the classroom all day.

Both of them have totally changed.

After you've done AIT I'll talk to you about retained reflexes grin - or you can search old threads we've had on it.

yuckythingsonthefloor Sat 30-Jul-11 11:28:28

DOLFROG thank you so much for all that information, it's incredibly helpful to have help in sorting the wheat and the chaff. It's difficult to feel confident in taking action on the basis of what research there is, it feels like one must take a leap of faith with any of these programmes. I take your point about the impact on a child if the treatment doesn't have any effect. I don't know whether my DS has a delay or a disability, I suspect a bit of both, though I am encouraged to think, by the way he is going aged 7 doing the things now such as more imaginative play in the way he might have earlier in life, that there is more delay than I had thought. Also, I now get it that the harm element is the possibility of false expectation whereas I had thought there may be some damage to the hearing or auditory process.
On the other hand INDIGOBELL, you obviously have just had the most amazing experience, and it is encouraging. As I said, my son's classmate also had a good experience and his mother recommended it to me out of the blue. I think I will have a talk to both companies anyway and see if I can get a better sense of how they could help his particular difficulties. I would like to do SOMETHING if I can as it would make such a difference in school if he could attend to what was going on around him and not get into trouble because he's talking at the wrong time. Or to help him with the ebb and flow of conversation. So I'm a bit torn.

Do either you know anything about whether TLP or LP are different from AIT, or where I could look? When I google I just seem to get advertising. Would APDUK know even if they don't endorse them?

IndigoBell Sat 30-Jul-11 13:11:56

TLP and LP are slightly different from AIT. They're all based on research by Tomatis, and they've all taken it slightly different ways.

I think TLP and LP take far longer than AIT (which only takes 10 days).........

dolfrog Sat 30-Jul-11 17:56:01

yuckythingsonthefloor

The basic research by two French researchers at at the end of the last century, were investigating how various presentations of sound may be theraputic for those who have sound processing problems or disabilities, much of this research was done either before or independently of the research into how we actually process sound based information using the new technologies which come under the umbrella term neuroimaging.
during the persiod when the two strands of research came together in the late 1980s and 1990s the initial conclusions was that these therapies were the answer tot the newly identified sound processing deficits such as APD, which can cause problems processing sound based language, which in turn can be a key contributory factor or one of the many underlying issues which can cause autism.
The big issue is that although the research into disabilities like APD has been very intensive, the researchers are still trying to develop the technologies and related scientific understanding to identify how the brain processes sound based information, and how it extracts meaning from sound based information. So they still do not know what causes APD, yet.

The researchers who have developed the programs also have a need to sell their programs in part to enable future development and improvement etc. And like all these types of program the whole basis of their existance is that that they are able to provide some help to some who have problems with a specific brain function or activity. So it is know that these programs can provide some form of therapy for some who have a specific type of problem or information processing deficit. But what they can not tell you is why and how it works, and more importantly they are not able to be specific as to which causes of the problem their program actually addresses. Which goes back to the lack of identification of the underlying neurological causes of issues such as APD.

This will then lead to groups of APDs, who will gain some benefit from using one of these programs, and other groups of APDs who try the program but gain no benefit.

Living with APD is about anticipating what will happen tomorrow and hoping that your coping strategies will be in place when you need them (working memory ect) Each individual APD will have various subtypes of APD issues which cause the processing problems, while at the same time each APD will have different natural or developed alternative cognitive skills, and abilities to work around their deficit or disability. and this development process begins from birth, or from the onset of APD for those who acquire APD via say glue ear. So we each develop coping strategies based on our own cognitive strengths, or our ability to develop alternative compensating skills.

These programs can only provide a specific type of coping strategy, and only at a very basic level. The type of coping strategy offered by the program may not match the coping strategy option already developed by and individual who has APD, or match to possible alternative cognitive skill ability options an individual APD may be capable to develop. The lucky ones get a good match, but this is more by luck than any scientific judgement.

So these programs can work for some, but not all.

And i come into the "not all" category. As a family we tried one of the programs you mentioned, and it soon became appearent that the program was undoing my existing coping strategies, which was really causing me problems at work as it was affecting my ability to do my job. And that the strategies the program was trying to provide was not suitable for my coping needs. Fortunately we were offered the program as part of a APD research project.
So choosing to use one of these programs remains a leap in the dark, and you may gain some benefit as was the case for IndigoBell, or you may find there has been little or no benefit.
From a research perspective they are looking for long term benefits (life long), which no program as yet been able to demonstrate.

dolfrog Sat 30-Jul-11 18:18:23

yuckythingsonthefloor

There is some research regarding the relationship to how we process language and how we process music. Especially with regard to the skills and training of musicians. (many of these programs are sound or music based)
The leading researcher is this area is Nina Kraus, and i have a collection of her research papers which you may find interesting. (I have not updated it for a couple of months now) Which may provide a better understanding of the issues.

LeninGrad Sat 30-Jul-11 19:06:17

Message withdrawn at poster's request.

IndigoBell Sat 30-Jul-11 20:13:28

Lenin - I'm fairly sure with this place you do it at home.

I think you have to go to Reading once for the assessment, then they lend you the stuff and you do the therapy at home.

I think. It was Becarooo who rang, not me......

yuckythingsonthefloor Mon 01-Aug-11 12:33:07

DOLFROG, thank you for that explanation, you have made this all so clear, ie that is effective some of the time but that it is hit or miss, depending on the source of the APD. Out of interest and if you have any time left after the detailed responses you have already kindly given on this thread! what kind of coping strategies do you mean?

My DS has some abilities which I's sure have developed to the extent they have as ways of coping, ie he is hugely mathematical and I know that counting and numbering things has been a source of reassurance to him growing up, a kind of way of coping with the jumble of everything else. It's a real plus point for him at school but it may have originated from the need for order. Is that the kind of thing you mean?

I will have a look at the Nina Kraus. Interestingly my mother is a classical pianist so perhaps that has played a part in DS's auditory development. I gather there is also a close connection between music and maths.

INDIGOBELL and LENINGRAD they advertise remote AIT on the website of the Sensory Clinic, so I'm assuming it's possible. I am going to speak to them this week so I will post what they say.

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