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Support for Auditory processing Disorder (APD)

dolfrogdolfrog Posts: 347Member Pioneering
All of our family have a clinically Auditory processing Disorder (APD).. The problem has been that we have never been able to find anyone who is capable of providing any support and or understanding regarding our complex disability.

Replies

  • CockneyRebelCockneyRebel Posts: 5,250Community champion Disability Gamechanger
    Hi @dolfrog and welcome

    Would you like to tell us a bit more ?
    Be all you can be, make  every day count. Namaste
  • steve51steve51 Posts: 5,883Community champion Disability Gamechanger
    Hi @dolfrog

    Good Evening & Welcome 🙏🙏

    I am one of the Community Champion’s here at Scope.

    I have got some info for you below which I do hope it will be helpful????

    https://www.nhs.uk/conditions/auditory-processing-disorder/

    @steve51 


  • dolfrogdolfrog Posts: 347Member Pioneering
    edited April 8

    Unfortuntaly the NHS web site's web page is not really inline with international rsearch regarding Auditory Processing Disorders, a bit behind the times.

    I was involved with the medical research councils APD research program 2004-2009, I ram the support organisation thye required to get their initial government funding back in 2002-2003.

    The problem is the ignorance of NHS audiologist, and the so called professionals whoi shouls make up the MRC recommended  multi discipline support team (audiologists, speech and language pathologists, psychologists). They only want to continue persuing their own career marketing and fail to provide the support and understanding that those of us who have Auditory Processing Disorders require.
    Allk of my family have a clinical diagnosis of having an Auditory Processing Disorder going back to the late 1990s. We have no support post diagnosis from UK medical / support professionals. Who from our perspective are incompetent and profesionaly negligent
    The temporal type of Auditory Processing Disorder is the main underlying cognitive cause of th developmental dyslexia symptom, and the dyslexia industry do not want Auditory Processing Disorder to be recognised as it would highlight that their phonics based programs would not help 60% of dyslexics, all about money.

    Hopefully you may know a professional wh is trained to provide support and understanding for those of us who have an auditory processing disorder.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @Androgen mentioned APD on this post and @Nystagmite talked about APD here.

    Our community champion @Ami2301 had been told there was a possibility she had APD, how are you getting on Ami?

    @dolfrog thanks so much for sharing, I hope you can connect with our members.
    Scope
    Senior online community officer
  • Ami2301Ami2301 Posts: 5,812Community champion Disability Gamechanger
    Infortunately, t's still very much an ongoing battle @Sam_Scope
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • dolfrogdolfrog Posts: 347Member Pioneering
    In recent days I have had to mve my APD related research paper compilations as CiteULike where i have complied my research paper collections for the last 10 years is closing down.
    I have just about got half way through setting up a new compilation set up at Zotero, which has a completely different layout structure and format.
    There is a public viewable group option which i have used to create a new accessableAPd research paper compilation. you may find some of the information of some interest Zotero Auditory Processing Disorder (APD) Group 
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited May 20
    Hi,

    All of my family, 3 sons, my wife and I, have a clinical diagnosis of having various types of Auditory Processing Disorders. We are all clincially diagnosed at various assessment centres (Sheffield University, Great Orrnond Street Hospital (GOSH), and University College London (UCL) ) between 2003 and 2012. Auditory Processing Disorders are a listening disability, or the brain not being able to effectively process the sounds the ears hear, which includes sound based communication such as speech.
    The temporal form of Auditory Processing Disorder is concerned woth having problems processing the gaps between sounds, which can include the gaps between words in rapid speech. The temporal form of Auditory Processing Disorder is also the main underlying cognitive cause of the developmental dyslexia symptom, what the dyslexia industry call a phonological processing deficit. 

    The Medical Research Council recommends a multi discipline support team for those of us who have auditory processing disorders consisting of an audiologist, a speech and language pathologist, and a psychologist, help those of us who live with auditory processing disorders work around our sound processing limitations and suggest and may be help develop the alternative compensating skill and abilities we may be able to access to work around our limitations. 

    Unfortunately so far we have  not been able to locate any local NHS medical professionals or support staff trained and qualified or willing to learn about our disability So far.we have only come across professional  ignorance and  incompetence from our local NHS Trusts so called support services, and this just make our mental health worse. for me personally it causes high levels of blood pressure.

    Do you know where we can get the support and understanding we need so that we can begin to not feel so depressed, and have UK mental health teams increasing the public awareness of auditory processing disorders, so that we don not feel so much like freaks by others in our community. In recent years I have become house about mainly just ot avoid the disability discrimination from others who have never heard of Auditory Processing Disorders, and do not understand how best to communicate with me. 
  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @dolfrog how are you and your family doing today? 

    Thank you for sharing this with us. I am sorry to hear what you have been through. I'll tag in @NicolaLatheySLT our speech and language advisor ; who may have some suggestions. 
  • dolfrogdolfrog Posts: 347Member Pioneering
    Hi Antonia_Scope a week has passed since your post, above. As you can see the lack of any reply from  @NicolaLatheySLT is only a further demonstration of the lack of support those of us who have Auditory Processing Disorder receive from UK support professionals, who prefer to avoid us, and market their limited support services, and their lack of willingness to learn about the nature of  our disability and try to provide some support and understanding. 
  • Adrian_ScopeAdrian_Scope Posts: 4,540Administrator Scope community team
    Hi @dolfrog, unfortunately the overwhelming majority of our advisors here are volunteers and as a result only have limited time each week to respond.
    I know you've not been satisfied with your treatment on the NHS, but what sort of treatment are you receiving for your mental health as a result of APD at the moment? (Sorry if you've mentioned this somewhere else!)
    Senior Online Community Officer
    Scope
  • dolfrogdolfrog Posts: 347Member Pioneering
    edited May 28
    Adrian_Scope 
    due to the ignorance and professional negligence of our local NHS trusts audiologists, speech and language, and especially psychologists I have been totally ignored, and i have had no support what so ever for my mental health issues. I have found that running a support group on Facebook (currently it has just over 12,500 members) has been of some help as I can share my issues with others who have my listening disability. 
    the problem it seems tis that I know more about my disability, than those who should be trained and qualified to provide the suport and understanding those of us who have auditory processing disorder require. 
    And it would like to poinyt out that one of  your advisors had a good description of my disability posted on their page, but deleted it as soon as I mentioned that it was a good description of my disability. Just trying to hide their ignorance, 
  • Ami2301Ami2301 Posts: 5,812Community champion Disability Gamechanger
    Posts are likely to be removed if they are duplicates.
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • dolfrogdolfrog Posts: 347Member Pioneering
    Ami2301 
    The post that was deleted was not a duplicate, it was a description of issues provided by the speech sand language advisor. From my perspective it was deleted by the initial author to get rid of my comment, describing the list symptoms and issues being a good description of Auditory Processing Disorder. basically just to hide their professional ignorance, and that of the members of the organisation they run. 
  • Ami2301Ami2301 Posts: 5,812Community champion Disability Gamechanger
    I understand the frustration with the lack of understanding from health professionals as I am currently challenging a diagnosis of APD too. Our advisors help as much as they can, I doubt there is a health professional that is aware of every single condition. I'm sure it was not because of ignorance as Scope is a very supportive place to me, there have been quite a few system errors over the last month or so, so it could be because of that. Definitely not ignorance.
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • dolfrogdolfrog Posts: 347Member Pioneering
    Ami2301 
    I started an adult APd group called "OldAPDs" on Yahoo back in 2000, which over the years has included an online research program which an  Australian psychologist who works with with adults who have APD a the research had contributions from an international  group of adults who have APD. the result articles "Controlling the Chaos" and "The Trouble With Strangers" can be downloaded from Damien Howard's web site Ear Troubles 
    I also run a Facebook Auditory Processing Disorder (APD) support group, which has an international membership of over 12,500 mermbers mainly parents of children who have APD. The problem is a lack of adults who have APD willing  ot explain the issues of living with APD, which is the main underlying  cognitive cause of the dyslexia symptom. 

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