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

fairybellsxofairybellsxo Member Posts: 44 Courageous
Hey Everyone! I hope everyone is well during this tricky strange old time.

Lock down has been strange for me, first of all adapting to a new normal has been incredibly hard! and not knowing what the future brings, so that's been just lovely! 

To add to the mix I have been recently diagnosed with Asperger's at the start of the year and I was also told roughly around the same time that this was happening, that the job that I have grown to know and love will be taken away, as we are all being made redundant! :( needless to say I am trying to keep my head above water but I am absolutely terrified about what the future brings, but I am mindful that I need to be open minded and try to be as positive as I can be.

Anyway I love music, poetry ( I love writing!! ) Drawing/painting! and nature, among many other completely random things!

I am looking to speak with like minded people as there are times where it get's lonely and It would be nice to pop on here to help others in their time of need too! 

:) Hope everybody is okay! 



Replies

  • fairybellsxofairybellsxo Member Posts: 44 Courageous

    This is a poem I wrote about the current situation :) 

    Wishful and wistful.

    To dream of normality,
    In a world of new belongings,
    To hope and feel settled,
    With unsettled grace.

    To ponder the chances,
    of chance-less fate,
    To offer the possibility,
    of a probable haste.

    To a path that follows,
    A wander-less stroll,
    A river flowing,
    Bountiful, gold.

    To be wishful and wistful,
    is an unusual thing,
    but in times like these,
    the birds, still sing.

  • RonniRonni Member Posts: 162 Pioneering
    Welcome @fairybellsxo
    Nice poem.

    We have a few poets here.

     It's a quiet sunday always a few around though.

    There nice bunch of people.

    Sure you will some like minded people. And lots of help, advice and friendliness  from all. Take care.



  • fairybellsxofairybellsxo Member Posts: 44 Courageous
    Hello @Ronni

    Thank you for your comment :) and thankyou for your kind words about my poem.

    It does seem a little quiet today, maybe it'l be a little more lively tomorrow! I Hope you've had a lovely day, it's been a bit rainy but I enjoy the rain, I find it relaxing :) 

    All the best.
  • RonniRonni Member Posts: 162 Pioneering
    @fairybellsxo Spring is nice, not a fan of rain.i find autumn relax. Not a fan of summer if it to hot and winter cold.

    Having said that I do find waterfalls. Fountains the ocean waves and flowing
    streams visualy relaxing.

    Enjoy your rain.

  • 66Mustang66Mustang Member Posts: 3,861 Disability Gamechanger
    Hi, I have been diagnosed with Asperger's as well. I'd be interested to know what job you were doing before you were made redundant?
  • fairybellsxofairybellsxo Member Posts: 44 Courageous
    @Ronni Hello :) I find streams and the Ocean very calming and relaxing, I always say It feels like my thoughts are being taken from my mind when the sea draws close and then takes the worrys away when they crash into the waves :) I enjoy the rain, when I can watch it from the comfort of my room through my window :D.

    @66Mustang Ah I hope your coping okay, when I found out Ill be honest I personally felt like I had been granted with bad luck against my own choosing and I felt very sad, I feel a little bit better now and I am trying my best to build my confidence back, slowly but surely. 

    Before I was made redundant I worked as a complaints manager! I have absolutely no idea how I managed to stay in the role for as long as I did, I found my kinder less harsh approach calmed people down, but I don't think I could have continued it on for much longer, the redundancy was a blessing in disguise in that way, but I will miss the friends I made there as we all seemed to fit in perfectly, we were all a little odd in our own ways :) 

    :) 
  • 66Mustang66Mustang Member Posts: 3,861 Disability Gamechanger
    I don't think you need to think anything bad of being diagnosed with it. I have found it doesn't make any difference, it's just a label you have been given. It definitely doesn't make any difference to who you are as you are still the same person as before!

    That makes sense about being a complaints manager. I have a similar demeanour to what you describe and seem to be able to calm family members down that are angry or upset but I wouldn't have the confidence to do a public facing job like that!
  • IrishMancIrishManc Member Posts: 34 Courageous
    I have (undiagnosed) Aspergers which as I’m on Universal Credit, the jobcentre want me to get formally diagnosed, to improve my chances of regaining suitable employment but with the problems with GP’s at the moment, including in terms of getting an appointment for referral, I’m trying to find a workaround to this without needing to go through a GP - I was made redundant from full time entry level Supermarket retailing after 17 years at age 49 in September 2019, since moving to the U.K. in 2002 where I live alone, and aside from doing online courses during lockdown, including to improve my CV and interview skills, I’ve found it very difficult to find any suitable employment, even part time, temporary, fixed term contract - added to this has been being separated from my extended family in my native Republic of Ireland due to Irish government travel restrictions inbound from the U.K. despite holding an Irish passport and it is unlikely that I’ll even get home for my 50th birthday in October 2020 
  • kaiasparrowkaiasparrow Member Posts: 28 Courageous
    Hey Everyone! I hope everyone is well during this tricky strange old time.

    Lock down has been strange for me, first of all adapting to a new normal has been incredibly hard! and not knowing what the future brings, so that's been just lovely! 

    To add to the mix I have been recently diagnosed with Asperger's at the start of the year and I was also told roughly around the same time that this was happening, that the job that I have grown to know and love will be taken away, as we are all being made redundant! :( needless to say I am trying to keep my head above water but I am absolutely terrified about what the future brings, but I am mindful that I need to be open minded and try to be as positive as I can be.

    Anyway I love music, poetry ( I love writing!! ) Drawing/painting! and nature, among many other completely random things!

    I am looking to speak with like minded people as there are times where it get's lonely and It would be nice to pop on here to help others in their time of need too! 

    :) Hope everybody is okay! 



    Hi! I'm sorry things have been a little rough recently with your job, lockdown, and everything. I am starting to seek out an ASD diagnosis now ,I'm 23 and have been displaying quite obvious signs since I was a toddler but no one in my life really knew enough about it. I love writing too but really struggle to get motivated, and I love nature. I live right near the Yorkshire Wolds so I love going out for walks, it's been the best thing for my mental health during lockdown! 
  • IrishMancIrishManc Member Posts: 34 Courageous
    Ronni said:
    @fairybellsxo Spring is nice, not a fan of rain.i find autumn relax. Not a fan of summer if it to hot and winter cold.

    Having said that I do find waterfalls. Fountains the ocean waves and flowing
    streams visualy relaxing.

    Enjoy your rain.

    I find that one of the nicer things is being on an overnight ferry in the middle of the Irish Sea, both summer and winter, between Holyhead & Dublin (I grew up in a little village in rural Ireland but have lived in Manchester since 2002 during the failed pursuit of my former lifestyle which caused me to move to the UK) - it’s a hugely spiritual experience in calm seas and has enabled me to reconnect in a different way with the faith I was raised with and also my cultural roots 
  • rox001rox001 Member Posts: 12 Connected
    I was diagnosed with Aspergers 8 years ago and still I don’t know how I feel about it? Overnight my life changed, I now have several phobias, many intolerances and simply can’t stand being around people at all. My life is me and my Cat! I hated my job and was glad when I was made redundant - I now work for myself and never have to see people at all. But I still love my garden, listening to music, cooking and my work. I have to say I don’t mind it all as long as I’m left alone! To some it’s just inconvenient and they can get over certain situations and to others Aspergers is frightening which I completely understand but once you accept it and adapt your life to it in a positive way, it’s not so bad. Rox 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited July 2020
    You might like to have a look at "A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis" 
    https://www.frontiersin.org/articles/10.3389/fpsyg.2015.02024/full 
    As usual most UK medical professionals are decades behind international research, they do not like to learn and keep up to date, and work as part of a multi discipline team to best help and explain issues to their patients. 
  • harry01harry01 Member Posts: 132 Connected
    Can anyone tell me what the clear signs that someone has Asperger's. I was misdiagnosed with this 10 years ago. 

    What scientific tests do they carry out? Thanks
  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    Hi @harry01, how are you doing? An Autism diagnosis is based on multiple things, although there is not a scientific test. However, here is what the National Autistic Society say about how you get a diagnosis of Autism.

    The diagnostic criteria are clearer and simpler than in the previous version of the DSM, and sensory behaviours are now included. This is useful as many autistic people have sensory issues which affect them on a day-to-day basis. It now includes 'specifiers' to indicate support needs and other factors that impact on the diagnosis.

    DIAGNOSTIC CRITERIA

    The manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

    I hope this helps. :) 
    Community Partner
    Scope

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  • harry01harry01 Member Posts: 132 Connected
    Yes, I thought so. No scientific test bug they're happy to ruin someone's life 'diagnosing' them with it. 
  • harry01harry01 Member Posts: 132 Connected
    It's unforgivable what they did. Completely unforgivable. I'm an intelligent man. I had this happen to me. There was no genotypical basis for it. NO genotypical basis
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited August 2020
    Hi @harry01
    There is a great deal of medical professional ignorance and incompetence regarding these types of issues, mainly due toe the lack of understanding of the international research regarding these issues from the last decade or so, and that there is still a great deal of further research required before there is a complete neurological understanding of these complex issues. 
    Many who have my communication disability Auditory Processing Disorder are MISS diagnosed as having ASD by incompetent medlcal  professionals.
    Part of the problem is the lack of multi-discipline teams from various medical professions working together to understand and explain these complex issues, they tend to only want to work on their own massaging their egos, and marketing their limited understanding of the real issues. 
    You could have a look at my PubMed "Autism" research paper collection at 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/10371460/public/  
    "Autism and Regression" collection at
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/10119901/public/  
    "Autism (ASD) review articles" ( i have not up dated this collection in 4 years unfortunately)
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/44155656/public/  
    and may be 
    "Auditory Processing and Autism (ASD)" 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/10260366/public/  
    and may be "Brain Development and Maturation" 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/40969667/public/ 

    I hope this may of some help 
  • harry01harry01 Member Posts: 132 Connected
    Hi @dolfrog that makes an awful lot of sense based on my experience.

    My own thoughts at the time was that the whole process was deeply invasive and artificial.

    You go into a room full of psychiatrists staring at you writing notes with what I would judge as fake smiles. Yes, I did get that sense of ego. I'm the doctor - you're a fool attitude. The reports they wrote about me I found hard to read. Noone presented an alternative explanation. 

    And why should someone confide anything in them when they treat you like that?!

    To be honest, I remember the start of the assessment. This guy says 'Harry, you don't get people, do you.'
    I was so shocked and simultaneously insulted. I don't think anyone should be spoken to like that. 






  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited August 2020
    Hi @harry01, how are you doing? An Autism diagnosis is based on multiple things, although there is not a scientific test. However, here is what the National Autistic Society say about how you get a diagnosis of Autism.

    The diagnostic criteria are clearer and simpler than in the previous version of the DSM, and sensory behaviours are now included. This is useful as many autistic people have sensory issues which affect them on a day-to-day basis. It now includes 'specifiers' to indicate support needs and other factors that impact on the diagnosis.

    DIAGNOSTIC CRITERIA

    The manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

    I hope this helps. :) 
    Hi @Chloe_Scope
    The problem as @harry01 described, psychiatrists are not trained or qualified to begin to assess and diagnose the underlying cognitive causes of social communication disabilities such as Auditory Processing Disorder which can be a factor as part of the multiple sensory processing issues which can combine to be part of ASD.
    ASD is cause by brain regression between the ages of 2 and 3 years of age when there are structure problems during the brain development and maturation. 
    So those who are suspected of having ASD need to be assessed by a medical multi-discipline team that are trained and qualified to assess and diagnose the multiple complex issues which can combine to be part of ASD.

    We need to stop the current medical professionals ignorance, incompetence, and pure professional negligence regarding understanding and explaining these multiple disability issues. 

  • chiariedschiarieds Community champion Posts: 6,404 Disability Gamechanger
    edited August 2020
    I have to disagree somewhat. Whilst many genes might be implicated in those with ASD (+ some environmental issues), these are not as yet identifiable. This is the case with my own disorder, so, in the absence of knowing a gene(s), knowledge is based upon the most current scientific studies/standardized tests available.
    @dolfrog has given his understanding, but doesn't say what percentage of those that have ASD have his family's Auditory Processing Disorder.
    The majority of medical professionals are not ignorant, incompetent, nor negligent (tho I have met many in my own case who were not willing to listen), & if you wish to look at medical abstracts about ASD, please just use PubMed, the medical database both myself & @dolfrog use to see current info instead of those medical abstracts he saved some 4 years ago. Our Drs. understanding of many disorders keeps changing due to research if they take this onboard.
    @harry01- I'm sorry for the very poor experience you had. You can ask for a 2nd opinion.
  • dolfrogdolfrog Member Posts: 434 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.
  • chiariedschiarieds Community champion Posts: 6,404 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.
  • dolfrogdolfrog Member Posts: 434 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.. 
  • chiariedschiarieds Community champion Posts: 6,404 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.
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited August 2020
    @chiarieds
    We have had different life experiences, and do things differently probably due to our different disabilities.

    [Removed by moderator]
  • chiariedschiarieds Community champion Posts: 6,404 Disability Gamechanger
    I have reported @dolfrog's comments, as I'm certainly not using 'disability discrimination.'
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