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Recently Diognosed with Aspergers, looking to speak with like minded people :)

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  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    edited August 2020
    @chiarieds
    The research regarding the possible multiple issues that can possibly combine as part of ASD is still on going.
    As is the research regarding many of the identified issues such as the types of Sensory Processing Disorder, ADHD, Developmental Coordination Disorder (DCD), and how the brain processes the various types sensory information such as Auditory and Visual Processing Disorders. Currently there has been no percentage values regarding these issues. 

    My family. Our eldest son was one of the first children in the UK to be diagnosed as having what was then known as CAPD back in  the 1990s. All 3 or our children now have a clinical diagnosis of having APD as do my wife and I. 
    I was the first adult in the UK to be clinically diagnosed as having Auditory Processing Disorder a few years later to help the UK Medical Research Council (MRC) gain UK government funding for a 5 year Auditory Processing Disorder research program. My diagnosis was my qualification for setting up APDUK the support organisation the MRC needed to gain government funding. I set up APDUK 2002/2003 and the MRC got their funding in 2004. APDUK , worked with the MRC  Auditory Processing Disorder research program 2004-2009 run by Prof David Moore at Norringham University, and the various leading UK clinical consultants including those at Great Ormond Street Hospital, and APDUK ran a telephone help line. APDUK was wound up in 2014.

    However many who only have Auditory Processing Disorder have be MISS diagnosed by incompetent medical professionals who are not adequately trained or qualified, as having both ADHD, and ASD. The problem is that too may so called medical professionals do not want to work as part of a multi-discipline team, but only want to massage their egos, and market their current careers, and continue to market inappropriate therapy programs and technological aids. All about making money, and not about understanding and explaining the real issues.
    Some so called UK medical professionals and researchers are decades behind current international research such as still diagnosing Asperger Syndrome.
    And currently most UK audiologists are completely ignorant regarding Auditory Processing Disorder, which is pure professional negligence being years behind international research.
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    @dolfrog - I'm not doubting that some with your disorder have unfortunately been misdiagnosed, & current info as far as research is ongoing, & is the same with other disorders. I've found in my own case as regards Chiari 1 Malformation, that USA Drs are a decade in front of ours, & there is not as yet a percentage known that might have this as well as  Ehlers-Danlos Syndrome.
    I do dispute that some medical professionals don't want to work as part of a multi-disciplinary team, etc. This may have been felt to be the case with your family's problems, but you are turning this into a wide generalisation about any on the autistic spectrum.
    I'm sorry you have a grievance, but back this up with claims with medical papers you've looked through, rather than giving links to medical paper's abstracts indiscriminately, please.
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    @chiarieds,
    The USA does not lead most research, however it does have a very good marketing options to sell therapies and new technologies. There are many multiple issues which can contribute to ASD, which require a multi-discipline team to assess and diagnose the multiple factors each individual may have, 
    Abstracts are how many research papers are listed by many libraries. And it is possible to find and download full copies of many research papers including those published at PubMed Central. There various other ways of gaining free access to research papers, including from the researchers themselves. 
    If you want to have a look at full research papers you could have a look at my Pearltrees compilations which are listed by research journals http://www.pearltrees.com/dolfrog 
    Another problem is the senile academics at some UK universities who are trying to hide their ignorance in order to maintain their career funding.
    And most UK medical professionals do not like working as part of a multi-dscipline team as this means that many would need to be retrained in order to understand how many issues require input from many other medical professions, and not just from their own so called limited understanding of complex issues. Such is the level of corruption amongst many UK NHS staff.. 
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    edited August 2020
    @dolfrog - I don't dispute that ASD requires a multi- disciplinary approach.
    As I may have mentioned, I am fully aware of how to obtain full medical papers, thank you.
    I would rather just access PubMed to gain independent medical advice rather than looking at your compilations, thank you. If I wish to research, I do this independently.
    Your assumptions are what disconcert me, such as there are 'senile academics trying to hide their ignorance,' & most medical professionals do not like working as a 'multiple-discipline team,' & 'corruption' amongst many NHS staff. If you have proof, then do say, otherwise please desist from making such comments, thank you.
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    edited August 2020
    @chiarieds
    We have had different life experiences, and do things differently probably due to our different disabilities.

    [Removed by moderator]
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    I have reported @dolfrog's comments, as I'm certainly not using 'disability discrimination.'

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