Visual and hearing impairments
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Support for auditory processing disorder.

mikapikamikapika Member Posts: 3 Listener
Hi everyone I'm new here! 

I was given a diagnosis of APD around 4 years ago by an NHS audiologist after complaining of long term hearing difficulties despite passing my hearing test amongst other things. I've not had any tests to support this diagnosis apart from the standard hearing test and was advised to use the hear coach app which helped a little. 4 years later APD has a massive impact on work and home life, not just with the hearing issues but with memory also. I haven't told my work as I don't have any test results to back up the diagnosis. I'm feeling a bit lost and fed up with it and wondered how much luck people have had in getting an official diagnosis. Also if there are any non Facebook support groups out there. Thank you so much.

Replies

  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    edited June 2020
    Hi @mikapika - Welcome to the community. I'm sorry to read about the difficulties you're facing. You may get some help if you look at the following website. They do also have Facebook support, but there's a lot of info on their website which I hope helps. See: https://apdsupportuk.yolasite.com/

  • mikapikamikapika Member Posts: 3 Listener
    Thank you, will have a look.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Welcome to the community @mikapika, I can imagine that would be really frustrating and hard for you. Would your GP be able to give you a diagnosis letter so support could be put in place?

    Please let us know if we can do anything to help. :)
    Community Partner
    Scope

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  • RonniRonni Member Posts: 162 Pioneering
    @mikapika

    It Was suspected that a have APD along with Dyspraxia.
    Despite  both being Nationaly and internationly recognised. There are only a few specialised  that work in either field. 
    Most only do assessments for children.

    Adults with dyspraxia have to pay for assessments.

    With ADP not sure.

    My audiologist, just do hearing test and give me aids which are no good.
    Been physicaly deaf since I was 17. They know very little about APD.

    Dyspraxia includes dyslexia and dyxclcula. But alot of differences. It not just about words wrong way round.


    It focus on short term memory. And the way our brains visualy translate things. Includes things like into walls  tripping up.
    Everything things. Forgetting words  and grammar in writing (totaly me) forget things, like did I lock the door short term memory can be realy bad.
    Repeating things. (Always)

    ADP is the phonetic version .
    Even if you hear of  odd words.
    Your brains trys to translate. You get the answer in your but the you try to say it and you've even forgotten it or doesnt come out quite right.

    It frustrating. Tried to learn sign. I can do so.e butwhen others sign the same word back. I just star blankly.no idea.

    But we can learn. But without assessments by educational pschologist and audiologist.we dont  get the help. And people start to presume you cant be educated or help.

    We hear and see very differently 

    Just for the record I have a degree in  history and sociology. It was very difficult. 
    But because they do assessments for dyslexia. I had mine aged 27.
    I got
    support.

    So my suggestion would be try an education psychologist. 

    I'm physicaly deaf and
    nuerologicaly deaf.

    Dyspraxia is a neurological condition. Classed as a 
    learning disability. 
    Both are neurological sensory 
    Disorders/ or disabilities.


    I'm no expert. Just lived this way 49 years now

    Good luck.



  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited June 2020
    mikapika said:
    Hi everyone I'm new here! 

    I was given a diagnosis of APD around 4 years ago by an NHS audiologist after complaining of long term hearing difficulties despite passing my hearing test amongst other things. I've not had any tests to support this diagnosis apart from the standard hearing test and was advised to use the hear coach app which helped a little. 4 years later APD has a massive impact on work and home life, not just with the hearing issues but with memory also. I haven't told my work as I don't have any test results to back up the diagnosis. I'm feeling a bit lost and fed up with it and wondered how much luck people have had in getting an official diagnosis. Also if there are any non Facebook support groups out there. Thank you so much.
    I was the first adult in the UK to be clinically diagnosed as having APd back in 2003, all of my family 3 sons, and my wife also have clinical diagnosis of APD. I was diagnosed when i was asked to set up a UK support organisation to help the UK Medical Research Council (MRC) gain government funding for a 5 year APD research program. i set up APDUk in 2002/2003 and the MRC got their funding in 2004. The 5 year APD research program was run by Prof David Moore at Nottingham University. APDUK was wound up in 2014. 
    The MRC recommended that those who have APd should ideally be assessed and diagnosed by a multi - discipline team (audiologist, speech and language, and psychologist) but unfortunately most of these professionals prefer to work on their own and not as part of a team. There would also be a need for retraining, as APd was identified as the main underlying cause of what was called Specific Language Impairment, which is now being marketed as Developmental Language Disorder, and the Temporal type of APD, having problems processing the gaps between sounds is the main underlying cognitive cause of the developmental dyslexia symptom.
    Consultants at University College London (UCL) at Queens Square diagnosed adults who have APd, leading consultant being Doris-Eva Bamiou (also a leading APD researcher). Unfortunately most Uk audiologists are not adequately trained or qualified to assess and diagnose the various types of APD.
    There are 4 types of APD. 
    1) The Temporal type of Auditory processing Disorder (APD) is about having problems processing the gaps between the sounds that the ears hear, which can include the gaps between words in rapid speech. It is also the main underlying cognitive cause of the developmental dyslexia symptom.
    2) Speech in Noise is about having problems processing a target sound when there are low levels of background noise.
    3) Amblyaudia is about the brain processing better what one ear hears better then how it processes what the other ear hears.
    4) Spatial Auditory Processing Disorder is about the brain not being able to identify the location of a sound source.
    https://www.evernote.com/shard/s329/sh/35c143f8-30d8-4b16-81d9-bb9bbd34449f/23638e20a161955c968bedd5bf0e59c9 
    you might also like to have a look at "Gaps in Sound - Auditory Gap Detection and Auditory Perception"
    https://www.evernote.com/shard/s329/sh/1c87aa56-9c56-4b25-9849-417d96b86db9/8a2821317cfcc4fe1488acb63fc606a6 
    Working Memory issues can be a problem for those of us who have APD 
    Human Working Memory has limited capacity and is much like the RAM of a computer. We prioritise who we use our working memories sub consciously. Top priority is coping with any illness, next coping with any stress and or anxiety, next running any coping strategies we may need to work around our information processing limitations, and then our daily tasks. Those of us who have APD have to develop alternative compensating skills and abilities to work around our APD processing limitations.
    I have a PUbMed Working memory research paper collection listed in my "Some PubMed Audiology Research Paper Collections" which you may find of some interest.

    Unfortunately at this point in time we have to educate UK audiologists, speech and language, and psychologists regarding the various types of APD The clinical diagnostic tests are listed as part of  a diagram in the first research paper listed in the Joint European Research section of my "Some International Auditory Processing Disorder Research Papers" compilation which is listed country by country 
    https://www.evernote.com/shard/s329/sh/f5a4fffb-bf47-491b-97e3-e3cbee583af6/514394d1b0bf900e8ab031ed701d89c7 

    I see you do not like Facebook, however I run one of the APD support groups "Auditory Processing Disorder (APD)" which has over 15,000 members. 
    I did have a Yahoo group the OldAPDs for adults who have APD but yahoo have reduced their group options in recent months, however we did become involved with soem online research with an Australian psychologist Damien Howard, and the resulting pdfs are available from his Ear Troubles web site on the article page.  "Controlling the Chaos" and "The Trouble with Strangers" 
    (over half way down the web page)
    http://www.eartroubles.com/articles.html 

    I hope this helps

    I forgot to add a link to some graphics i use to both explain APD and lobby the medical professionals on Twitter and Facebook. two links
    https://dolfrog.wordpress.com/2020/04/03/some-auditory-processing-disorder-graphics/ 
    and 
    https://photos.app.goo.gl/JSxYrh1oLqsfmCYU8  
  • RonniRonni Member Posts: 162 Pioneering
    Hi @dolfrog

    Thankyou so much for putting all of that info on here.

    I will be going through it all thankyou so much.
  • mikapikamikapika Member Posts: 3 Listener
    dolfrog said:
    mikapika said:
    Hi everyone I'm new here! 

    I was given a diagnosis of APD around 4 years ago by an NHS audiologist after complaining of long term hearing difficulties despite passing my hearing test amongst other things. I've not had any tests to support this diagnosis apart from the standard hearing test and was advised to use the hear coach app which helped a little. 4 years later APD has a massive impact on work and home life, not just with the hearing issues but with memory also. I haven't told my work as I don't have any test results to back up the diagnosis. I'm feeling a bit lost and fed up with it and wondered how much luck people have had in getting an official diagnosis. Also if there are any non Facebook support groups out there. Thank you so much.
    I was the first adult in the UK to be clinically diagnosed as having APd back in 2003, all of my family 3 sons, and my wife also have clinical diagnosis of APD. I was diagnosed when i was asked to set up a UK support organisation to help the UK Medical Research Council (MRC) gain government funding for a 5 year APD research program. i set up APDUk in 2002/2003 and the MRC got their funding in 2004. The 5 year APD research program was run by Prof David Moore at Nottingham University. APDUK was wound up in 2014. 
    The MRC recommended that those who have APd should ideally be assessed and diagnosed by a multi - discipline team (audiologist, speech and language, and psychologist) but unfortunately most of these professionals prefer to work on their own and not as part of a team. There would also be a need for retraining, as APd was identified as the main underlying cause of what was called Specific Language Impairment, which is now being marketed as Developmental Language Disorder, and the Temporal type of APD, having problems processing the gaps between sounds is the main underlying cognitive cause of the developmental dyslexia symptom.
    Consultants at University College London (UCL) at Queens Square diagnosed adults who have APd, leading consultant being Doris-Eva Bamiou (also a leading APD researcher). Unfortunately most Uk audiologists are not adequately trained or qualified to assess and diagnose the various types of APD.
    There are 4 types of APD. 
    1) The Temporal type of Auditory processing Disorder (APD) is about having problems processing the gaps between the sounds that the ears hear, which can include the gaps between words in rapid speech. It is also the main underlying cognitive cause of the developmental dyslexia symptom.
    2) Speech in Noise is about having problems processing a target sound when there are low levels of background noise.
    3) Amblyaudia is about the brain processing better what one ear hears better then how it processes what the other ear hears.
    4) Spatial Auditory Processing Disorder is about the brain not being able to identify the location of a sound source.
    https://www.evernote.com/shard/s329/sh/35c143f8-30d8-4b16-81d9-bb9bbd34449f/23638e20a161955c968bedd5bf0e59c9 
    you might also like to have a look at "Gaps in Sound - Auditory Gap Detection and Auditory Perception"
    https://www.evernote.com/shard/s329/sh/1c87aa56-9c56-4b25-9849-417d96b86db9/8a2821317cfcc4fe1488acb63fc606a6 
    Working Memory issues can be a problem for those of us who have APD 
    Human Working Memory has limited capacity and is much like the RAM of a computer. We prioritise who we use our working memories sub consciously. Top priority is coping with any illness, next coping with any stress and or anxiety, next running any coping strategies we may need to work around our information processing limitations, and then our daily tasks. Those of us who have APD have to develop alternative compensating skills and abilities to work around our APD processing limitations.
    I have a PUbMed Working memory research paper collection listed in my "Some PubMed Audiology Research Paper Collections" which you may find of some interest.

    Unfortunately at this point in time we have to educate UK audiologists, speech and language, and psychologists regarding the various types of APD The clinical diagnostic tests are listed as part of  a diagram in the first research paper listed in the Joint European Research section of my "Some International Auditory Processing Disorder Research Papers" compilation which is listed country by country 
    https://www.evernote.com/shard/s329/sh/f5a4fffb-bf47-491b-97e3-e3cbee583af6/514394d1b0bf900e8ab031ed701d89c7 

    I see you do not like Facebook, however I run one of the APD support groups "Auditory Processing Disorder (APD)" which has over 15,000 members. 
    I did have a Yahoo group the OldAPDs for adults who have APD but yahoo have reduced their group options in recent months, however we did become involved with soem online research with an Australian psychologist Damien Howard, and the resulting pdfs are available from his Ear Troubles web site on the article page.  "Controlling the Chaos" and "The Trouble with Strangers" 
    (over half way down the web page)
    http://www.eartroubles.com/articles.html 

    I hope this helps

    I forgot to add a link to some graphics i use to both explain APD and lobby the medical professionals on Twitter and Facebook. two links
    https://dolfrog.wordpress.com/2020/04/03/some-auditory-processing-disorder-graphics/ 
    and 
    https://photos.app.goo.gl/JSxYrh1oLqsfmCYU8  
    Thank you so much this is really helpful, I'll definitely have a look.

     I called my GP today and she is going to try and figure out where I can be referred to for testing.
  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    edited June 2020
    Hi @mikapika - Just to add, I don't know if you looked at the link I gave, as there's a PDF about a quarter of the way down the 'Home' page on the right called 'APD Testing Centres 2020.pdf.' Whilst the majority of the centres are for children, there's one for adults available on the NHS, i.e.
    Royal National ENT and Eastman Hospitals
    47-49 Huntley Street
    London
    WC1E 6DG
    Telephone: 020 3456 7890
    There's not much information online, but it looks like the referral should be for the 'Diagnostic Physiological Measurement' department as 'Audiology - Hearing assessments' are mentioned. It just opened in February this year, which is perhaps why there's no reference to the consultants as yet.
    Perhaps you might email the owner of the website to find out more. See: apd.support.uk @aol.co.uk
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